LIVER SUPPORT - usually helps the liver make glutathione and assists the body in detoxification.
AVOID ACETAMINOPHEN (as that blocks the liver's ability to make glutathione, essential to move out toxins that cause pain. At least one LLMD - Dr. K - says: never take acetaminophen.)
MASSAGE, gentle. Even from good friends who may do feet, lower legs and hands.
WARM bath in Epsom Salts (not hot). Or just a warm bath but no artificial dyes or typical bubbles. No perfumed products. They can make pain worse.
MOVEMENT - Gentle yoga, Tai Chi, Qi Gong, Pilates, walking. GENTLY bouncing on a mini trampoline (or even just "in place" to move lymph.
A PT or Balance Ball - but if you buy a new one, let it off-gas somewhere else. Keep away from heat and sunshine.
"SLOW DANCING" - even by yourself - to music that engages your heart, Even if lying down, you can move (or even just breathe) to some kind of music. -
[ 11-03-2011, 05:04 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- As for her trying to get into a fibromyalgia clinic.
Unless they are going to give her some support herbs and nutritional supplements - or low cost massage - this is not going to help at all and could hurt.
If I had all the money I spent over years of "fibromyalgia treatment" I would have had enough to actually get treated for lyme once that was diagnosed.
I found out there really is no such thing as "fibromyalgia" as a diagnosis (it is a set of symptoms) - although some of the support methods help to a degree but some of the drugs they pushed clobbered my liver, my brain and cause my mood to plummet.
She might want to explore a sliding fee scale naturopathic or acupuncture clinic -- or massage school - for some adjunct treatments. That would be FAR better than some clinic that perpetuates the fairy tale about fibromyalgia.
I know you say she has no money (and I can relate). But if there is anyway she could get a good assessment from an ILADS LLMD or LL ND, that is best.
Or she may want to explore the complementary methods and see if she could do some things on her own that will target the chronic lyme.
She had the rash. She had the dx. It was not resolved. Something has to address that directly.
Connect her to her local lyme support group for a start. I sure wish her well. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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IckyTicky
Frequent Contributor (1K+ posts)
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posted
Thanks. The fibro clinic she is trying to get into also tests and treats for Lyme I'll be sure to pass all this along to her.
She can not travel out of state (lives in Colorado) and the closest LLMD is over 3 hours away (she lives in the mountains and is pretty secluded). She is trying to get on a waiting list and is suppose to be making calls today.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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scorpiogirl
Frequent Contributor (1K+ posts)
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posted
Anodyne Machine.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
Those FM clinics are VERY expensive. In the end, they'll give her Lyrica or Cymbalta.
Pain relief:
many of the ones Keeb listed .. esp turmeric and the GLUTEN FREE DIET!
also high quality mangosteen
glucosamine, chondroitin, MSM combo
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Magnesium, magnesium, and more magnesium, and malic acid for the Fibro. Also check thyroid (free T3, free T4, TSH, anti-thyroid antibodies, and some like to also check reverse T3 -- see http://www.stopthethyroidmadness.com/ for more info).
I was told I had Fibro in 1999, but when I started taking Magnesium for an unrelated issue, all the pain I thought was due to Fibro went away and hasn't returned. Magnesium deficiency can cause symptoms that are difficult to tell apart from Fibromyalgia.
Slow, gentle exercise only - a few minutes at most to start with... Yoga and related exercises, stretching, gentle strengthening exercises are very good.
For Lyme-related joint pain, Buhner recommends Nettles 1200mg/day. I have found Nettles (I use organic powdered nettle leaves) to be fantastic for relief of my joint pain - including the wandering joint pain in my legs, arthritic hand pain, etc.
Adequate sleep is also very important for both Fibro and Lyme. If she is having difficulty, I have found GABA taken 30-60 min. before bedtime to give me much higher quality sleep, and it makes it a lot easier for me to fall asleep and stay asleep (or fall back asleep if I get up to use the bathroom).
I was told to take GABA on an empty stomach, but I find that it actually works better for me if I take it with a small meal or snack.
-------------------- -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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-------------------- "To eat is a necessity, but to eat intelligently is an art" - LaRochefoucauld
Lyme neuro symptoms for 20+ years. Infected in Maryland. Diagnosed with Lyme Jan 2011. (previously diagnosed with CFS, Fibro, peripheral neuropathy) Posts: 261 | From Colorado | Registered: Oct 2010
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I started the SCD way of eating 7/31/11 and have been feeling much, much better! It's gluten free, sugar free, low lactose. My daughter has been on it for over 4 years for her gut issues.
posted
I tried the fibro clinic. they sell alot of expensive supplements and you are not treating the real cause of the pain which is the lyme and mycoplasma. I wish I would have saved the money I spent there and had gone to a LLMD earlier. I wish your friend well . the fibro clinic is better than no treatment.
-------------------- sprite8 Posts: 38 | From MA | Registered: Sep 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- IckyTricky,
you wrote: " . . . The fibro clinic she is trying to get into also tests and treats for Lyme . . ." (end quote)
A lot of places do really crappy tests just to pacify the patient.
My questions below seem to sound like I'd be grilling them, but really, this would be in just an inquisitive tone, in order to find the best match - and save every time (and her money) in the long run.
The tone is really important so they know you are not out to get them, but just to find the best doctor for your needs.
I'd ask before even going in: WHAT LAB do they use? What tests, exactly. And do they require a CDC positive for the IgG? Does the IgM influence their decision to treat?
"How long would it take to cure lyme?" The way they answer this is very important.
Ask if it matters what day of the week the blood is drawn. If they say "no" - they are wrong.
Still, she had the rash. She has symptoms.
She does not need another lyme test. In my opinion.
She needs a real lyme expert to do a physical exam and talk to her to asses cognitive stuff, too. Probably test for coinfections.
Now, if by some chance that Fibro clinic has a doctor who is ILADS-educated, she may be in luck.
I would call the doctor's office and ask of the office manager:
* the professional memberships of the doctor
* their training in lyme; "Where did they learn about it?" and
"Who are the authors the doctor holds in high esteem regarding lyme"
[you can also repeat that for the doctor. Write down the names, come back here and people will tell you about them.]
* are they a member of ILADS?
You might also ask the doctor to call you for a very sort informational interview to get an idea of if it would be a good working match.
Often, a call of a couple minutes is gratis. You may ask what the fee might be for just 5 minutes, or 10, or 15 minutes. I have paid for several phone chat sessions that saved me tons in the long run.
But, watch the clock and stay very firm on the time or it could cost you more.
I also failed to reign in a couple rambling doctors who wound up costing me a bundle for their going off on tangents that really did not relate to me.
But let the office manager know up front that you are not asking for a diagnosis or even wanting to discuss possible treatment.
They cannot discuss YOUR details over the phone until you are a registered patient, first seen in person.
You "just need to know a bit about the doctor's background and education in this area, needed to treat my case."
You should be able to ask, though, how many cases of lyme he's treated?
How many cases of chronic lyme?
Ask him to explain the different form of the spirochete bacteria.
"Does the same medicine treat all forms?" you would ask. If he says, "yes" - he is not lyme literate (it takes various kinds of Rx).
what about coinfections, other tick borne infections as well as
other chronic stealth infections?
How long might he typically treat?
============================
Ask at the local lyme support group about this doctor, about the clinic.
Also ask at the local fibromyalgia & the Chronic Fatigue Support groups. You need a range of experiences.
Personally, I'd save every penny for a rife machine rather than give to a doctor who perpetuates the myth of fibromyalgia. -
[ 11-05-2011, 07:54 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Bob Dylan's song, "A Thousand Miles Behind" comes to mind:
"I'm just one too many mornings . . . and a thousand miles . . . behind." --------------------------------------------
You say your friend is 3 hours (and a decent bank account balance) away from a LLMD. I assume that would be the one in Boulder.
She should get his video from last weekend's ILADS conference. VERY GOOD. Read his links in the ND thread below, too.
I had an hour phone interview with him a few years ago and gathered some great educational details.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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IckyTicky
Frequent Contributor (1K+ posts)
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posted
You guys are so wonderful! Thank you!!!
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
If it's one of those FFC places (Fibromyalgia and Fatigue Centers) I would say stay clear.
This is based on my personal experience, my twin's experience and many of our friends, as well.
I was blessed to get my Lyme diagnosis there but they realy don't know how to treat Lyme & Co. It's "one size fits all" and they sell their own brand of very expensive supplements.
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I'll be sure to pass all this along to her.
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