posted
Hello, has anyone been diagnosed with CRPS/RSD and also is suffering from Lyme's Disease? Any answers will be helpful. I am told I have both. YAY!
Posts: 84 | From New Jersey | Registered: Aug 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
There are some who believe RSD is Lyme/Bartonella.
I had RSD for 4 years, and am now currently in remission. I know it could come back anytime, because when I stop exercising, I start getting strange feelings in the foot where my RSD started.
I had Lyme then, too, just didn't know it. I wasn't diagnosed until 2007, but did my battle with RSD from 1997-2001. I got Lyme, it is believed, in 1977 or 78.
Antihistamines (Benadryl) did more for my pain than any pain medication ever did when I had the RSD. Epsom salt bath soaks also were wonderful.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- To clarify terms for those who may not know:
RSD is an older term used to describe one form of Complex Regional Pain Syndrome (CRPS).
It's often an umbrella term, even for even other umbrella diagnoses such as fibromyalgia, CFS, etc.
I do not believe this should be a separate diagnosis if it's caused by lyme. Yes, it can be caused by lyme - or other tick-borne or other stealth infections.
Certain nutritional deficiences can also cause this, such as magnesium deficiency (which is very common with lyme, too).
Bottom line: work with your LLMD on this, on any and all symptoms that are lyme or TBD connected. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks so much! I feel like an alien has overtaken my body. My ribs, back and hips hurt horribly. Have also been to a Hem/Onc to check for cancer. So far so good with that, however, my Igg was out of wac which would most definitely point to immunity issues.
May I ask how your RSD was treated? I have gotten two epidurals in both the right and left side of my back. Have also gotten a shot in the left side of my neck. Waiting to schedule the right side of my neck. Take Gabepentin which doesn't seem to do a whole lot of anything except make me sleepy.
Thanks again Razzle and appreciate your help.
Posts: 84 | From New Jersey | Registered: Aug 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- With lyme (there is no "s'), pain most often is a result of the toxicity of it, irritating or damaging nerve fibers throughout the body. This toxicity and infection action also causes a great deal of inflammation.
Lyme must be treated. Other tick-borne infections must be assessed, too.
Infections must be assertively addressed for long enough with combination approaches that can rotate from time to time. Be sure your doctor is a real LLMD, ILADS educated, so to speak.
Liver support is the number one SUPPORT aspect to address to help mitigate pain. Liver support supplements are most often ANTIOXIDANTS. Detail:
GMO foods that destroy the GI Tract; Gluten; Dairy.
Exposure to synthetic fragrances can also cause pain in many people. Avoid all artificial scents in home cleaning, personal care and laundry / drying products.
MOLD can also be a cause of pain. But that's another huge topic.
Environmental Working Group -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- POSTURE is also very important.
Past injuries can also be in the picture. For body work, never, ever allow your spine or neck to be suddenly twisted as many chiropractic treatments do. Sudden twists can be very damaging and devastating for anyone with lyme.
NO SUDDEN TWISTS - no head stands, no harsh bouncing . . . too much strain on a very tender spine / neck / brain that is often inflammed with lyme.
Inside, there are some good gentle techniques. One is UPLEDGER INSTITUTE - find their website for doctors and PTs trained in this method.
MYOFASCIAL RELEASE can be a good massage technique to get at the main starting point for some stubborn pain. Other kinds of massage can be great, too.
FELDENKRAIS is good to help us learn body mechanics for all our activies of living, even just at the computer or in the kitchen. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Wow! You know your stuff! Thanks!
Posts: 84 | From New Jersey | Registered: Aug 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Found out nearly everything the hard way - time and again, of course. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Member # 12673
posted
- Now, we and your LLMD may well know that CRPS/RSD has a strong connection and can be caused by various tick-borne infections.
However, if you have CRPS/RSD diagnosis from another kind of doctor, even if an "umbrella" term, it may be be useful to get certain kinds of therapy covered by insurance.
Just consult with your LLMD on every suggestion, whether an Rx or physical treatment. Be aware, though, that the same kinds of PT for most is not likely safe for someone with lyme. Ask your LLMD for EVERYthing that might be suggested by any other doctor first.
Steroids (such as prednisone) are often offered for pain. Avoid steroids at all costs. Steroids can make lyme so much worse, for a very long time.
posted
There was a patient -- I think her name was Jessica who went to Mexico a couple of years ago for experimental treatment for RSD. She thought lyme and maybe coinfections were the cause of her illness.
I will try to find her blog link.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Please note that Jessica has very strong religious convictions and her most recent update 7/7/13 focuses on her attendance at a religious convention where she shared her medical story.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
For simple peripheral neuropathy caused by lyme probably the most common treatment (besides treating the infection) is IV IgG. From what I have read that treatment is at best 50 percent effective for those who qualify for the treatment.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to IV IgG as one option for immune support (and that is often used with lyme but if you can get it under a different diagnosis, it may be easier to obtain and may be covered by insurance -- still be sure your LLMD is involved in how this is done).
Hyperbaric Oxygen treatment (HBOT) can also be very helpul. For lyme, HBOT can be very nice -- but, again, if the CRPS diagnosis might help you get this, it might be covered. Also be sure your LLMD is consulted beforehand and keep lyme out of it with your other doctors. Fly under the radar with lyme, just be sure your LLMD is involved in your questions to other doctors. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- LOW DOSE NALTREXONE is a treatment that some LLMDs are using, along with anti-infective treatment and other support methods.
It has a wide range of use, although may not be covered for various reasons and must be obtained through a compounding pharmacy. About $35. a month.
Treatment of Complex Regional Pain Syndrome (CRPS). Using Low Dose Naltrexone (LDN). Pradeep Chopra & Mark S. Cooper. Received: 7 November 2012
Excerpt:
. . . Conclusion:
Our use of LDN treatment for CRPS patients was motivated by a presumed neuroinflammatory etiology for longstanding CRPS symptoms.
The remission of pain and dystonic spasms in Case 1, as well a remission of all CRPS symptoms (including fixed dystonia) in Case 2, provide evidence that a multi-modal interventional approach,
which includes low-dose naltrexone (a known glial attenuator), should be considered as a treatment option for the treatment of CRPS patients, particularly those patients with dystonic movement disorders. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
You all have been more than helpful. Thanks so, so much. More info is always better. xo
Posts: 84 | From New Jersey | Registered: Aug 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Also search past LymeNet Archives for a sampling of some here who have done, or tried, LDN. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
quote:Originally posted by everythinghurts: Thanks so much! I feel like an alien has overtaken my body. My ribs, back and hips hurt horribly. Have also been to a Hem/Onc to check for cancer. So far so good with that, however, my Igg was out of wac which would most definitely point to immunity issues.
May I ask how your RSD was treated? I have gotten two epidurals in both the right and left side of my back. Have also gotten a shot in the left side of my neck. Waiting to schedule the right side of my neck. Take Gabepentin which doesn't seem to do a whole lot of anything except make me sleepy.
Thanks again Razzle and appreciate your help.
Well, after seeing dozens of doctors who thought I was imagining the pain, I flew to Florida to consult with Dr. Hooshman (not Lyme Literate), who was considered to be the world's expert on RSD at the time. He diagnosed me, but none of his treatments worked for me.
I then was sent to a pain clinic, who referred me to a Rehab specialist. He put me on an aggressive physical therapy program done at home. It was this program that put me into remission.
I was not given anything for pain by any of the doctors I saw throughout the whole 4 year time period, except by Dr. Hooshman, and what he gave me did not do anything for the pain.
Yeah, Neurontin did nothing. Lidocaine patches did nothing. Was never given Narcotics, except when I had surgery, and they helped some, but the side-effects weren't worth it for me.
I am so, so thankful the physical therapy program worked for me. It was horrendously painful in the beginning, but eventually things improved and I started noticing that my RSD affected areas were not hurting as much. It took about 6 months for the pain to completely disappear.
If I ever do get a relapse of the RSD, I would start the exercises again, very slowly and carefully as before, and I also would take Homeopathic Belladonna and use essential oils for pain.
But I have spoken with others who believe that Lyme predisposes to the development of RSD/CRPS, and Bartonella has pain out of proportion to other symptoms as one of the key indicators that you have this coinfection.
So of I were you, I would seriously consider treating for Bartonella even if tests are negative. I'm clinically diagnosed with Bart. despite negative tests.
I hope this helps. Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Yep, helps a lot. What are you taking for the Bart? I am allergic to Ceftin and had a reaction with the Doxy.
Posts: 84 | From New Jersey | Registered: Aug 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I'm not on anything for Bart at the moment, but I was taking Andrographis. My LLMD (who is also an Oriental Medicine Doctor and a Naturopath) said Andrographis has anti-Bart properties as well as anti-Lyme.
I am planning on starting Bartonella Nosodes (homeopathic remedies) soon. And I want to start using Essential Oil of Clove on my feet (where I still have Bart. symptoms even today) again.
I was on Cipro on and off for a while, but it seems to not get the Bart. for me...maybe I have a resistant strain, or maybe I wasn't on enough of it, don't know.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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My experience with something similar to this is that because I had not addressed lyme directly, the treatment did not "take" as intended. Lyme toxins can cause all kinds of spasms and pressure in the tissue.
This would be best as part of a comprehensive treatment program.
Some similar treatments may be just as good, however, some are not. Be sure to check on their training and methods when you compare.
One issue is that some therapists will not put pressure on the exact points long enough (say, for a full 3 minutes or whatever is required). Cutting corners on time is of no benefit to the patient. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Razzle
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Member # 30398
posted
Nope. Just exercises & stretching.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
OK.. thanks to both of you. I will find out next week exactly what they are doing. I think it may at least be similar to the myofascial release.
They will also be doing "dry needling" .. similar to acupuncture except it does not follow the Chinese meridians.
She did mention it is not "stretching" etc.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I have had Lyme for 2 years now and suffer from a sharp stabbing electric shock like pain in my hamstring all the time when I walk. I think its either fibromyalgia or crps. My GP cannot help at all. I was treated with doxy right after getting Lyme but have had symptoms afterwards- chronic or plds..it's hard. I would like to get a MMP card but stupidly Lyme is not on the symptom list in CT
-------------------- Jody Noller Posts: 1 | From Northeast CT | Registered: Aug 2015
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posted
I have RSD in my rt foot due to yrs of undiagnosed torn disc L4/L5...sciatica nerve pain. My doc RSD is a different animal... I have tried everything just learned to deal w it, plus oxy..still not back free
Posts: 315 | From USA | Registered: May 2005
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posted
Forgot to say I get IVIG 50 g every 3 Wks. I think that helps also. There is some info re this on the net
Posts: 315 | From USA | Registered: May 2005
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Jody, welcome to Lymenet!
It sounds like you need to do several things:
find a Lyme Literate doctor (LLMD). You can go to "Find a Doctor" here and post a request for one in the areas you could get to. Finances are always an issue to take into consideration, too, in terms of what you can manage.
Also, it sounds like you need Physical Therapy from a PT, who has experience with CRPS. It is NOT like anything else at all!
Plus, Pain Management doctors are the ones that typically diagnose and treat CRPS. But there again, you want to chose your doctor carefully, making sure that he/she has a lot of experience with it, and has good reviews, etc.
Of course, this would be step by step, doing the most important first, according to your pain level.
If your pain is bad, I would go with the Pain doctor first. It is ESSENTIAL to treat CRPS as early as possible, so you can hopefully turn it around. I have a couple of threads about it.
Sadly I know more than the doctors do about it. Sigh.
PS I looked again at your post. My opinion is that you should start with a top Pain Management doctor, who does nerve blocks.
Don't wait! If you wait, it is very difficult to put it in remission. Ask for the soonest appintment and to be put on a waiting list. Keep calling to see if they have an earlier apointment.
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