This is topic Has anyone ever tried Savella?? in forum Medical Questions at LymeNet Flash.


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Posted by DaniC515 (Member # 30043) on :
 
My doctor recently put me on Savella, a depression typ e medication normally used for fibromyalgia patients but said it's good for anyone with any type of chronic pain. I'm just wondering if any other lyme patients have ever tried it and how it worked for them? Thanks
 
Posted by Keebler (Member # 12673) on :
 
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Is your doctor an ILADS-educated lyme literate MD (LLMD) ?

Are you being treated for lyme ?

If this is intended to decrease pain, did he suggest Magnesium, Fish oil and Curcumin FIRST? He should have.

But, to be sure - you are being treated for lyme because if you have lyme, band-aid approaches for pain will not work until you also address lyme and the nutritional deficiencies that lyme causes.

If all those pieces are in place, certain other Rx may be added but you may not need it if your magnesium levels are improved (most lyme patients have very low magnesium and that contributes to pain. So does liver stress. So, liver support helps decrease pain).

You would also need to be assessed for other tick-borne infections.
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Posted by Keebler (Member # 12673) on :
 
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http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/24039

HOW TO IMPROVE COMFORT LEVELS: Looking for long term pain management

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http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP - Links to articles & supplements
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Posted by DaniC515 (Member # 30043) on :
 
This is just my primary care physician, he discovered the lyme, after misdiagnosing as fibromyalgia for about 2 years. (Should I mention that he has had lyme before).

I am currently NOT being treated for the lyme. After first being referred to a rheumatologist after the discovery, being treated for 28 days of doxy, then having more bands positive than I had originally and then having a ID doctor pretty much tell me I was crazy, I was discouraged.

I have not seen a doctor for the lyme since then (about a year and a half). I know, not very smart, but I was very discouraged and down about it. It is now too bad to ignore anymore. I do however, have a LLMD in my town that I am planning to see, but it takes about 2 months to get an appt.

I was prescribed the Savella from my PC physician. I saw him because the pain of the arthiritis is getting overwhelming both physically and mentally. He said to try the Savella until I saw the LLMD. He made no other suggestions.
 
Posted by Keebler (Member # 12673) on :
 
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Do you have an appointment yet with a LLMD? If so, I'd call that office and ask their thoughts on you taking this at this time while you wait.

But, really, if for pain, I think you'd be MUCH better off with safer options. Some people have had problems tolerating Savella.

I'd start here:

Suggestions from Carol in PA:
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http://www.mbschachter.com/importance_of_magnesium_to_human.htm

The Importance of Magnesium to Human Nutrition

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http://www.iherb.com/Source-Naturals-Ultra-Mag-120-Tablets/1415?at=0

Source Naturals Ultra-Mag

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http://www.iherb.com/search?kw=peter%20gillhams%20natural%20calm

Natural Calm

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Also be sure that you have a good multi-vitamin and a very good FISH OIL. Google: OmegaBrite

Other suggestions in the Comfort thread above.

Good luck.
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Posted by Keebler (Member # 12673) on :
 
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Did your doctor test you for Celiac? Did he suggest a Gluten-Free diet? That helps many tremendously.
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Posted by Keebler (Member # 12673) on :
 
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http://www.lymepa.org/html/dr__j__burrascano_september_20_0.html

Burrascano's Powerpoint SLIDE presentation 9-20-08

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http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses

Dr. Burrascano's Treatment Guidelines (2008) - 37 pages

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As important as any supplements, sections regarding self-care:

Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES

and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.

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This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:

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

Nutritional Supplements in Disseminated Lyme Disease

J.J. Burrascano, Jr., MD (2008) - Four pages

==============================

It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.

http://tinyurl.com/6lq3pb (through Amazon)

THE LYME DISEASE SOLUTION (2008)- by KS, MD

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com

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http://www.lymebook.com/insights-lyme-treatment-strasheim-book

INSIGHTS INTO LYME DISEASE TREATMENT

- by Connie Strasheim

This book is based on interviews with 13 Lyme-Literate Health Care Practitioners. Each practitioner is given one chapter in which to share their healing strategies

http://www.lymebook.com/steven-harris

On-line Sample Chapter from the book: Chapter 1
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Posted by DaniC515 (Member # 30043) on :
 
Keebler- Thank you for all of your responses. Sorry it took me so long to get back to you. I have not yet made the appt with the LLMD yet, planning on doing that today. My PC doc said that if he didn't first try something for the pain that the LLMD would probably end up putting me on the Savella anyways.

I've tolerated it fairly well, on day 7 and do not start the full dose until tomorrow. I had 1 days of terrible nausea, but thats it. Although, it's probably too soon, I don't feel any "different" from it.

I will ask the LLMD tho about it of course.

I do not believe I was tested for Celiac. What does the Gluten free diet help with? My main complaint with the Lyme is the fatigue and all over body pain. (Although I do have others and have been worse at times) Every joint in my body makes me feel like I'm pushing 60 when I'm only pushing 30 and in great shape for my age.

Anyways, any suggestions are so GREATLY appreciated.
 
Posted by Keebler (Member # 12673) on :
 
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MAGNESIUM is the first remedy to use for pain relief. Fish oil, too. These are much safer than most pain meds and often work better, especially with Turmeric or Curcumin.

A gluten-free diet can help relieve "all over body pain" and "brain fog"

Chemical pain drugs do nothing to address the cause and can add so much toxicity for the liver and the kidneys and also mess with your brain and mood. Be sure to drink enough water when taking any pain Rx.

Please read about magnesium and FIsh oil first.

But, INFECTION CAUSES PAIN. So, I hope you can find a LLMD ASAP and really get to the cause.

It is not at all true what your PC doctor said about a lyme doctor needing to put you on a pain med anyway. With treatment for infection and with supplementing magnesium and fish oil, pain meds are often not needed. Still, when they are, LLMDs know how to best select the Rx, considering that the liver and kidneys are often challenged by lyme and many Rx can add to that.
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Posted by DaniC515 (Member # 30043) on :
 
I'm going to definitley get some Magnesium and Fish oil. I have to do some research and see how much I should take. I am currently not on any pain meds, only the Savella, and thats more for the "depression" associated with the pain.

I think I am also going to take something for liver supposrt because I did spend about 2 years off and on, on prescription pain meds. Thank you so much!
 
Posted by minerva (Member # 20410) on :
 
i have high levels of pain. its been my main symptom. i am on regular pain meds but my doc is always looking at options to help because nothing gets me lower then a 4 or 5 on a pain scale.

so i started the savella,i had a horrible time with it. my blood pressure dropped. i was constantly dizzy would feel like i would pass out when i stood up felt nausiated all the time.

it took a long time after i quit to get it out of my body. i have not done well with any medication that is used for the neurotransmitters like low dose antidepressents for pain like elavia,lyrica, neurotin.

we are all so different, so it might be a godsend for you which i hope is true. just sharing my experience.

i would also look at your detox pathways. i have a methlaytion problem i was tested for KPU and that too was a problem.

if you consider that first before you start treating you will do better with whatever treatment feels right to you and your LLMD either herbs or antibiotics. less herx less pain and shorter treatment for the long haul.
wish you the best!
 
Posted by DaniC515 (Member # 30043) on :
 
Minerva - Thank you for sharing.. Today is day 8 of the Savella and I have been fighting the urge to vomit all day. I have had bad reactions to toher medications before - Cymbalta - and this is nowhere near as terrible as that was. I can probably deal with the nausea if it starts to work with the pain.

I don't know what you mean by "detox pathways".. I'm somewhat new to this so please tell me what that means. Thanks
 
Posted by minerva (Member # 20410) on :
 
sorry, its taken awhile to hear from me but i am not on line everyday.

i hope it helps with your pain it did't make any difference for me. mind your BP while your on this.

hmm not sure where to begin. we all have ways of moving vitamins, minerals, nutrients as well as toxins like bi-products from celluar metabolism or death of organisms through our system.

one of the biggest reasons we feel bad during treatment is the die off from the lyme and co-infections. they release toxins and depending on how well our system can mop them up and purge them will impact how we manage any treatment.

you can have problems in detox pathways from your genes or you could develop them latter.

if you have the encyclopedia of natural medcine they give a very nice and easy discription on how phase 1 and phase 2 detox works with the liver.

It is just one example of the complex systems that our body uses, and it makes the rest of them easier to understand.

if you have a block or defect in any part of the path ( one chemical leading to another or turning on another chemical reaction) it can create a cascade of small blockages that can eventually can keep toxins circling over and over in the body or keep a vitamin or nutrients from being used.

Google KPU and lyme. Dr K has very good articles explaning this.

Dr. shoemaker (mold warriors book) explains a bit of the methyal problems.

if you look up Ysko and lyme you will find good info on a modified treatment for people who have lyme. Yasko's main research is on Autism and methyal problems.

hope this helps its a big subject and while i understand it in general i suck at explaining it!

i have read a lot of books and listened to a lot of folks here and i truely believe in order to keep you from causing more problems down the line you need to have detox pathways open and detox agents on board no matter how you treat.
 
Posted by minerva (Member # 20410) on :
 
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Posted by Keebler (Member # 12673) on :
 
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Along the lines of liver detox pathways and what can happen when they are stressed or dysfunctional, see the "Secondary Porphyria" post first:
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http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?

PORPHYRIA

Includes links from GiGi, Dr. K, and others about KPU / HPU (mauve factor) . . .

& links from TerryK regarding METHYLATION issues
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