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jean west
Member in Phase 2
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Posted: Mon Aug 15th, 2005 20:29 |
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Hello everyone,
This might sound like a silly question but my doctor at home has recommended that I see an osteopath to assist with lymph drainage which he says will help with detoxification. He has also recommended the MP. How do people who need manipulation for structural problems get round the issue of needing to be in the dark. Or don they not?
Jean.
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Lyme/CFS since 2001 or earlier. amitryptiline tramadol zopiclone; 1,25D = 38, 25D = 29. Sept 05: Avoid light&D/ Oct 05, Beni 40mg Q4H. Dec 05, Mino, 25mg qod.
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Belinda
Research Team
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Posted: Mon Aug 15th, 2005 23:16 |
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Hello Jean,
I relied on osteopathic manipulation and lymphatic massage techniques, as wonderful complements to the MP. I live in sunny Texas, where it's hard to stay out of the sun.
My tips are:
1) Explain the basics of the MP to your osteopathic manipulation physician and share all the basic background physician papers to read as they have time. Although s/he may not be managing your meds, s/he will likely be intrigued, and it always helps to have another physician on your team knowledgeable about the MP. Explain that you will be relying on them to help you so you can get the full benefit of the MP by supporting the lymphatic system and any other physical/mechanical problems you may encounter.
2) Explain your need to restrict your exposure to sunlight and bright lights. If they understand this need, the office may be willing to work with you so you don't have to sit for a long wait in a sunny waiting room, or they may make it routine to place you in a treatment room with no windows or with dimmers on the lights. (My osteopath's treatment rooms all have NO windows and the lights have dimmers.)
3) Try to schedule your visits so you will have a short wait - if the waiting room is sunny. The office may be most likely to be running "on time" the first appointment in the morning or the first appointment after lunch.
4) Wear all your protective clothing, including hat, gloves, NoIRs, long sleeves and K-cream when you go out to the doc. It helps if someone else will drive you to the office and drop you off at the door so you can quickly get indoors. Having someone else park the car saves you those extra minutes of sunlight while driving and walking.
5) Take off your extra clothing (jacket, hat, glasses, gloves, etc.) as soon as you are assigned a treatment room. If you have a friend with you, ask them to keep up with these articles.
6) Just as any other doctor visit, have in mind your most recent complaints so you can discuss these with the doctor.
7) After your visit, drink lots of water and schedule some quiet time at home - a nap is even better - so your body can make the most of the treatment and recover from the sun exposure.
All the best,
Belinda
Check the usual Tool List and this list My immune system response / symptoms are too strong. What should I do? for options to discuss with your doctor.
Please read Pain Control - Back Pain and massagelink
If muscles are in spasm or are tight, you may want to ask your physician about writing a prescription so you can try a muscle relaxer to keep on hand. These can provide excellent relief in some circumstances. If you have access to a good chiropractor or osteopathic physician, you may also find that gentle manual therapies are useful to help manage inflamed muscles and joints.
I've also found that these practitioners (chiropractors and osteopathic physicians) are usually good at recommending stretches or motions to do at home, or - on the other hand - warning what physical activities to avoid while you are dealing with temporary inflammation from the immunopathological response.
Belinda
Manual lymphatic massage does require specialized training, but it *is* something a family member can learn. My doctors taught my husband a few techniques and he took a class to learn more comprehensive treatments to use on me at home. If your wife learns more about this specialized type of gentle massage and then sees how much it helps you, she will probably be willing to learn and use it to help you. You could probably benefit from frequent therapy like this.
I got a lot of benefit from lymphatic massage in two areas:
- my chest, which felt not as tight and heavy and I coughed less and
- one leg which would swell up.
I still rely on lymphatic massage to help with that leg swelling.
You are on the right track thinking about walking and singing. Deep breathing, either from singing or gentle exercise like yoga or even stretching can stimulate the flow of lymphatic fluid. (I know there was a time I could not sing because it required too much effort and strength.) Any muscle movement will make the lymphatic fluid move. Just be sure you start very easy and efforts tolerable.
If your doctor says gentle exercise is okay, you might want to think about investing in an exercise (yoga) ball for $30 or less. If you don't fill the ball with too much air, you can sit and bounce on it for a "rebounding effect" to stimulate lymph. This is cheaper than buying a mini-trampoline and it may be safer if you're not steady on your feet. You can also use the yoga ball to lie on your stomach and roll around on your abdomen. Gentle pressure on the abdomen from the ball can help move lymphatic fluid. It doesn't take a whole lot to make a difference - only minutes.
Just be sure you try only one new thing at a time, start slowly and do only what feels beneficial and tolerable.
Belinda
I understand what you are describing: dry heaves in the morning after throwing up mucous, swelling in ankles and legs and more difficulty breathing in warm, humid air.
The swollen lymph node on the back of your ear may be a clue that your lymphatic system is struggling. When my lymphatic system was dealing with immunopathology, my ankle and leg would swell. Sometimes even my abdomen. And I would have more trouble breathing.
Manual lymphatic drainage is something that helped me. You may want to look into it and discuss it with your doctor. Here is information on manual lymph drainage of the leg and chest.
My experience was that the having my husband do the manual chest drainage technique made it easier for me to breathe and could stop coughing at times. It's a good one to do before going to bed and on getting up in the morning.
Belinda
Acupressure is a manual therapy that would fall under the general guidelines of our advice on Massage & Physical therapy
I would use this therapy judiciously only if a well-trained practioner understood it was to be for a specific purpose, such as alleviating intense pain, particularly if money is an issue and you are paying for this. Be aware that some acupressure treatment is intended to boost the immune system, which could make it more difficult for you to keep your immunopathology at a tolerable level.
Be cautious that you attempt this sort of treatment only with a practitioner you trust and who understands your current challenges. ~Belinda
How does the lymphatic system work? has many good links
Going to an Appointment.
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jean west
Member in Phase 2
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Posted: Tue Aug 16th, 2005 04:55 |
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Thanks Belinda,
Glad it wasn't a silly question? So is it OK to have your back exposed to dim lighting for half an hour during manipulation. Would I need to use that special cream on my back?
Thanks for responding,
Take care,
Jean.
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Lyme/CFS since 2001 or earlier. amitryptiline tramadol zopiclone; 1,25D = 38, 25D = 29. Sept 05: Avoid light&D/ Oct 05, Beni 40mg Q4H. Dec 05, Mino, 25mg qod.
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19392 |
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Posted: Tue Aug 16th, 2005 06:05 |
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Jean
see this link and the links within AVOIDING SUNLIGHT and BRIGHT LIGHTS How and why to protect skin and eyes while on the MP
Natural light > protect skin and eyes << neuro effect
Artificial light > protect eyes only.. > no need to protect skin..
Barb ....
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Dogster
Member in Phase 3
| Joined: | Mon Jan 24th, 2005 |
| Location: | Kansas USA |
| Posts: | 277 |
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Posted: Tue Aug 16th, 2005 13:09 |
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Hi all.
Massage just makes me feel awful, and I never seem to get any benefit. (Was not like that before I got really sick.)
Does anyone else experience this?
Can anyone explain why this is???????/
Thanks, Dogster
(I seem to have a LOT of nerve damage; irritating the nerves in any way seems counterproductive--be it massage, acupressure, acupuncture, manipulation etc. Anyway, this is how it seems to me.)
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CFS lyme RSD: pain migraine| tylenol fioricet flexeril tramadol temazepam| acidoph guaif/cold| Q| Cut D/exp Feb05| NoIR Mar05| June05 Comm Beni Q8H| July05 mino| Jan06 PH2| Aug06 1,25D=29 25D=17|
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carol
Advocate
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Posted: Tue Aug 16th, 2005 13:38 |
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Dogster wrote:
Massage just makes me feel awful, and I never seem to get any benefit. (Was not like that before I got really sick.)
Dogster:
This has been my experience also. Pre-MP, I used to get clidamycin IVs and schedule a massage immediately after. My thinking was that it might help the antibiotic penetrate the tissues/joints. The massage never seemed to have any effect, good or bad. (....and neither did the IVs, BTW!)
On one occasion since starting the MP I had a massage and it made me feel awful! I posted about this and there was some discussion which you can probably find.
I'm thinking that lymphatic drainage is different and I plan to look into this for myself.
Best wishes,
Carol
Mod add:
Q: is it conceivable that the massage has released Vit D from either fat of muscle tissue into the blood stream, causing the elevated 25D reading ?
Carol Reply: I don't know if massage would release vitamin D from my tissues, but I DO know it makes me feel bad. Pre-MP, I routinely got massages with no problems. Then, after starting the MP, I had occasion for a massage therapist to VERY GENTLY massage my hands and forearms for about 15 minutes. I was there for some "energy work" (that's a whole 'nother story!). But anyway, after that I was in so much pain I could hardly use my hands for several days. It was terrible! I can only imagine what it would have been like if I had gotten a 2 hour massage as you did. Even now, when I treat myself to a manicure and pedicure I say "no thank you" to the hand and foot massage. <<
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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LH1953
Member in Phase 3
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Posted: Tue Aug 16th, 2005 16:01 |
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| Hi Jean, Just read your posting. I have been under treatment for the past three years for chronic Lyme. It was diagnosed after 10 years of symptoms. Two years ago, I had 2 sessions of massage therapy, two weeks apart. I was having great pain in knees, as well as ability to walk. Doc thought therapy would help. BIG MISTAKE for me, as well. I could not walk at all for three days, my legs were numb, felt terriable pain, like 2 stiff wooden legs. Doc said, no pain, no gain. I was stupid enough to try again, after all, you get desperate, same reaction. Bottom line, never again. I find it best to listen to your body, be proactive in your health care. Docs can't know everything, you have to see what works best for you. If this is too difficult for you, then you know it isn't the right treatment for you. It's a long journey back, but at least there is hope now with the MP. I am waiting for my tests results, can't wait to start. I went off the immune boosters, nada, folic acid, for the first time in years, I can now bend my knees, the swelling has gone down, and there is hardly any pain. Let's give the MP a chance, I know it is going to work, Good Luck, Lori
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, alupent inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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CLefelt
Member in Phase 3
| Joined: | Sun Oct 24th, 2004 |
| Location: | New Jersey, USA |
| Posts: | 318 |
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Posted: Tue Aug 16th, 2005 16:34 |
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Dogster,
I too have had a bad response to massages after I became ill. I felt a major increase in body aches and weakness and head wooziness and had to stop them. The only explanation I received was from the first doctor who diagnosed Lyme; he said that other patients complained too and he thought it was because the massage "wakened" the spirochetes that were cozily napping...I'd take that with a grain of salt, but who knows?
Carol
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Lyme Bartonella CFS FM Chly Pneu; Klonopin Florinef Lexapro TriEst Prog 10/04: 25D=9 1,25D=70 4/05 4/06: 25D=6.2 1,25D=20.9 8/06:25D=<7 1,25=13; Mino 11/36/04 2Abx 3/19/05 3Abx 4/27/06
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DaveW
inactive member
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Posted: Tue Nov 22nd, 2005 12:07 |
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Hello (((Good folks))),
Since the lymphs are involved in the draining of the endotoxins released from dying CWD, could the experience of feeling very poorly after lymphatic massage be the result of this endotoxins being released by the physical manipulation?
I have the same very negative reaction to massage that have been cited by most others in the thread.
Belinda,
Thank you for the informative post above. Can you tell us what your experience was after the massage? Was it similar to the others?
For some reason, your sig line was not showing on your post above (on my computer). May I also please ask what your original diagnosis was, that brought you to the MP?
I am also wondering if the negative experience of a lymphatic massage would decrease after several consecutive lymph massages, once the lymph began flowing more freely again?
I am also wondering if the lymphs can be overwhelmed by the task of clearing excessive endotoxins, making them clogged, sluggish or inefficient?
Questions, Questions, Questions!
Thanks (to any with answers!), and best regards,
- DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19392 |
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Posted: Tue Nov 22nd, 2005 13:10 |
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Dave
as per the posts above, the response of any individual to massage will vary.. for some, the response may be managable, and for others unbearable. and that may change as the degree of sickness diminishes also.
Dr Marshall wrote: "If you are typical of the folks who come looking to the MP for relief, then you have a body which is very ill. It is systemically ill, there will be no part of it that has totally escaped damage. - when you get too much data it becomes not easy to analyse what is happening. Healing takes place on a yearly scale........ The MP is a curative therapy, we kill the bacteria underlying the disease process so that the patient is returned to full health.
see What degree of healing is possible using the Marshall Protocol?
A description of what to expect on the road to recovery, treatment endpoints, and the gap between the public and medicine's perception of successful treatment.
Barb ...
Regarding massage, I use a machine called a "pro shiatsu" which I find is superb for relieving any back (or other) muscle herx. You can buy one on eBay for the price of a single real massage and will never have to venture outside into the light for a real massage again. Also it is untiring and relentless and will never get sore thumbs LOL. ~ patrickburke
Dr Marshall
Physical shock can rupture the exoskeletons which protect the bacterial colonies from phagocytosis.
You should therefore only be using massage or physio if you, and your practitioner, know exactly what you are doing.
Massage and exercise both cause mechanical stress even at the cellular level, and do increase the amount of bug-killing. Both are helpful, especially in latter stages, but don't overdo them, as this is just as bad as taking too high a dose of abx
The L-forms survive inside the phagocytes 'floating' in a biofilm. There is a thin exoskeleton protecting the biofilm from the lysosomes, whcih would otherwise 'gobble up' the bacteria.
Mechanical forces on the cells are transmitted through body fluids, and some may weaken or break the exoskeleton structures, exposing the bacteria to the immune system. Since your immune system has been activated by Benicar, it will happily digest the bacterial DNA, and increase your level of immunopathology.
Exercise and massage may both exacerbate immunopathology in this way.<<
Are there any Guidelines on Exercise & the Marshall Protocol?
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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P.Bear R.N.
Research Team
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Posted: Wed Nov 23rd, 2005 01:06 |
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| Dave, As the lymph system is supposed to return fluid and toxins to the blood stream to be broken down and excreted by the liver, kidneys and skin, it would only make sense that lymphatic massage could make you feel ill. Some practitioners firmly believe that the lymph system gets blocked in many chronic disease states and in cancer, and there is even an alternative cancer treatment that entails injections into the lymph nodes to promote clearance. It seems most medical doctors seem to ignore their early training in physiology, and focus on other systems, not remembering how important the lymph system is to health. P.B.
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MCS, neuroborreliosis, fatigue, tinnitus, neck/facial/shoulder/lumbar pain, Bells palsy, Prostatitis, blurry vision, dizziness, 1,25D=48, MP2/05 MP3, cytomel, D25<5
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Belinda
Research Team
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Posted: Tue Feb 5th, 2008 15:59 |
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The treatment I had was not regular massage. It was lymphatic drainage, osteopathic manipulation and chiropractic manipulation - always using gentle techniques. I had the benefit of highly trained medical professionals who practiced these techniques. I don't recommend regular massage because most of our members are likely too sick for regular massage (it will release too much toxin).
My earliest diagnosis was fibromyalgia, followed by chronic fatigue and then sarcoidosis.
Getting lymphatic drainage or lymphatic massage is not a magic way to "turn on" the lymphatic system. A disease such as sarcoidosis can damage the lymphatic system and in dealing with the disease,the lymphatic system will still be working under a burden. So results from lymphatic drainage can be quite positive, but temporary.
Belinda
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