posted
I can not locate a LLMD in germany. In april 2008 I was on Doxy for only 20 days (What my doctor told me) and I only took about 17 days worth. That did not help, I still have
symptoms. Then in Jun 2008 I was on Infusion (Rocephin) for only 14 days. Again my doctor told me only 14. Since I been off the ABX I Feel a little bit worse. I.E. Spine hurts, lower
back hurts, spaced out in my mind. Legs feel funny, like Jello. I think I need to go back on ABX. Just don't know for how long and what ABX? Please help so I can let my
doctor know who is not a LLMD.I'm really at a breaking point and it's very depressing for me. Should I exercise I.E. Run or swim. I have an appointment in Aug. and will be tested again, but this time I want to be tested for co-infections and EBV.
I appreciate for anyone that can help me..... I'm so sad and I have the fear of losing my job because I can not function like I use to. It's hard typing this as it is.
P.S. I started having symptoms April of this year. :-(
Posts: 60 | From germany | Registered: Jul 2008
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Tracy, I try PM you, but you mailbox is full...
Posts: 60 | From germany | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Tony,
You may be SO LUCKY to be in Germany.
There are exciting results from a doctor who uses light treatments, of sorts.
Dr. W. is in Pforzheim, Germany
There are also other doctors in Germany using this approach. Dr. W in Pforzheim is the one some of the members of this group have decided to go over to consult.
Bionic 880, the further developed type in the following of ACU-LIGHT-BEAM-4000 and with that, one of the most innovating and powerful photon-therapy instrument of the world.
=========
Topic: Where did the "Successful Infra Red Treatment" thread by Gigi go?
Particularly, read posts by GiGi. She and her husband are over there now.
Best of luck.
=
I just poured through that tread for the doctor's contact info.
It's not easy to find but I have it from a previous thread that was deleted - if you want that - send me a PM.
I think the doctor had to turn off his phone for a while due to so many calls.
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[ 13. July 2008, 01:37 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Tony,
you were correct in NOT letting them do the spinal tap (lumbar puncture). If you need more about that, be sure to ask first. It's not very effective for finding lyme or Bb at all, as you seemed to know.
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You asked: "Should I exercise I.E. Run or swim."
Aerobic exercise can be very dangerous if infections are active - it can put undue stress on heart and the adrenal system.
Gentle movement is good and won't overtax your heart.
Walking, Qi Gong or Tai Chi sort of exercises - where there heart rate is not pushed but the body's circulation is encouraged - can be very helpful. You can do this for just a few minutes several times a day.
Swimming - if you do it gently - like maybe just gently tread water and stretch and slowly do a lap, rest . . . if you feel up to it AND it does not cause "pay-back" - exertion after exercise is a sign it was too much - or that the liver is stressed too much.
The liver has to work very hard to eliminate toxins during exercise. That can be good - if not overloaded. But, if overloaded, that can be damaging.
After reading the cautions below, I hope you can find just the right movement that works for you. I used to be able to swim very slowly and that worked for a while - but the water so cold I think that zapped all my strength. I loved Tai Chi in the water at a warm pool. Water aerobics would be too much unless you are further along in treatment.
Whatever you do, if you are overly exhausted from any exertion, reel back in. Rest every other day, etc. on days off from exercise, gentle movement is still good as best you can.
Encourage your body, but do not push past what your body tells you it can safely do. Do not think less of yourself if you have to streamline all your efforts to basic self-care on some days.
And (as you posted this concern on another thread) do not accept judgement from others who do not understand how important this is.
some cautions about aerobic exercise with infections - also to consider is the likelihood that lyme may not be the only infection present. Many lyme patients also carry co-infections.
In his guidelines, Dr. B: states: "Aerobics are not allowed until nearly fully recovered"
TREATING CHRONIC LYME DISEASE J. J. Burrascano, MD April 24, 2004 outlined section:
. ENFORCED REST; NO CAFFEINE
- Must try to prevent afternoon energy sags
- Proper sleep is essential
. REHAB AND EXERCISE PROGRAM
- Required for a full recovery
- Intermittent program one to three days per week
- Toning, stretching, posture, balance
- Aerobics are not allowed until nearly fully recovered
===================================
current ILADS Treatment Guidelines can be downloaded at www.ilads.org
[Post-polio expert] Dr. [Richard] Bruno points out that physical over-activity is the biggest cause of post-polio symptoms. [3] (See Dr. Bruno's "Fainting and Fatigue" in the Spring 1996 CFIDS Chronicle, page 37.)
EXCERPT:
when mice infected with Coxsackie B3 were forced to swim in a warm pool, the virulence of the virus was drastically augmented.
In fact, viral replication was augmented 530 times. This did horrendous things to the animals' hearts. We all know that to play squash with the flu can lead to heart attacks.
Much the same danger can be courted by undertaking hard exercise with M.E. (Called Chronic Fatigue Syndrome in the U.S.)
========== ==========
AND - exciting to keep in mind is that the Bionic 880 treatments by Dr. W. in Germany can target a variety of stealth infections - so that if lyme is not the only "player" all considerations are addressed.
that is WAY cool. Here's to hope!
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[ 13. July 2008, 01:38 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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bettyg
Unregistered
posted
tony,
so happy gabrielle was able to help you.
please send me a private message, 2 people standing together icon, and please give me info gabrielle gave you.
i'll add it to our nationwide/intl. llmd list, and forward to others who have this list!!! thanks so much!!
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