posted
Here's a quick background...I'm twenty-two years old. I've been battling LD since January 2009; It is now two years later. I'm on oral antibiotic tx. due to the fact that I developed a severe staph infection from my second PICC line. So here I am, just getting by...if you call this getting by.
The pain I am experiencing is so severe I could only relate it to a traumatic injury, a very painful traumatic injury. It feels as if my joints are being screwed shut and the inflammation is seeping out. I can barely describe it. The pain radiates. It's in every joint. My knees and L Hip are the worst. Yet, my elbows and fingers hurt almost as bad. I got off of all pain medications a few months ago. Do I go back? Is there any holistic remedies you could suggest? ANYTHING & EVERYTHING HELPS!!!??? I'm in desperation. I can barely make it around the house and now feel the need to get a cane, because walking is so difficult. Please, any suggestions are welcome. Thank You! =)
-------------------- "We are here to add what we can, not get what we can - from life." - Sir William Osler Posts: 2 | From Connecticut | Registered: Jan 2011
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
You really should post this in Medical Questions. I have a daughter 26 who has Lyme so I can really sympathize.
Are you taking any supplements like magnesium? There are many natural supplements you can take for inflammation. I would hope someone with this issue can chime in. A product like MSM may be helpful as well.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I suffer from chronic pain. Its no fun. I would suggest seeing a pain specialist. They are the people to go to for this.Just like you go to a specialist for lyme. They can make you much more comfortable.
Posts: 3905 | From USA | Registered: May 2007
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posted
Hi, I am in the same boat, I hate it. It is a constant struggle and I live on Pain meds. I have to. I don't know how you got off yours or why. I have the joint pain and stiffness but it has eased every so slightly and slowly since treatment 3 months ago. Currently on Minocin and Levaquin for Bartonella. Are you seeing an LLMD yet? Are you on any antibiotics yet? It is a long haul and you get worse before you get better. Right now, I am struggling with the depression from always being in pain. Please know that you are not alone in this. I have found some great support here and on roadback. Write me anytime... Kerry
-------------------- 30 Supplements Awaiting new protocol Diagnosed 2nd time 9/08/2011 with positive western blot No co infection Posts: 74 | From Pine Island, NY | Registered: Sep 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Why would you go off of your pain meds if you are hurting this bad??
It sounds like you need to get back on them.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
I did need a wheelchair but didn't get one, I just stayed in bed all day.
I could never go off of pain meds, I would be screaming and crying in pain all day and night if I did,
As it was, I was having nightmares because of the pain,then the pain would wake me up all night long!
Nuerontin really helps, I am a health nut and a athelete who used to train 30 hours per week plus work full time, this pain stopped me in my tracks cold!!!! now I have been bedridden for over 2 years!
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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posted
i am very sorry you are suffering like this.
it took me years to get a doc who understood pain ...got to have that! there is so much missinformation in the medical community around pain management.
your pain is real...you are sick and this illness causes inflamation and nerve pain so treat treat treat.
find a good doc who believes you and is not afraid of perscribing. chronic pain is very different then short term hence you need someone educated on that.
have you considered getting a second oppinnion from another LLMD? maybe you need more detox protocals.
/www.endfatigue.com is a good site, dr.Jacob Teitelbaum is a CSF doctor but his book " from fatighed to fantastic is great. he has a lot of great info on pain including pain meds, herbs and other therapies.
i don't know how much research youve been able to do...its hard but if you can read as much as you can. there could be some simple things you haven't tried that could help a bit....having your pain go from a 8 to a 6 isn't like being pain free but everything matters.
epson baths, saunas, massage, anti-inflamatory herbs or taking chorella as a binder could help along with pain meds could make a real difference. don't give up.
Posts: 161 | From sonoma county | Registered: May 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I used to have excruciating pain and was on morphine. What got rid of the pain for me was doing antiparasitic herbs and salt/c.
Parasites/worms can play a MAJOR part in Lyme disease. I also used a lot of coconut oil which believe it or not relieves pain.
Some people have the Filarial Worm co-infection and are not being treated for it. I was shocked when EVERYTHING pictured on
came pouring out of me after several months of starting the above mentioned protocols. My personal experience has shown me that antiparasitics are key in getting rid of this disease and the pain that goes with it.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
SSRI's (antidepressants) will reduce the pain, once the dose is high enough.
Anti-inflammatories, like systemic enzymes, fish oil, and magnesium, will reduce pain.
When I stopped the antidepressant, the pain and headaches increased tremendously. When I stopped the Wobenzym (an enzyme blend) the pain and headaches increased dramatically. When I stopped the fish oil, the pain and headaches increased.
When I'm taking all of those, I still have pain, but pain meds can bring it under control.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by minerva: /www.endfatigue.com is a good site, dr.Jacob Teitelbaum is a CSF doctor but his book " from fatighed to fantastic is great.
he has a lot of great info on pain including pain meds, herbs and other therapies.
I agree with this. Dr. Jacob Teitelbaum has so much helpful information online, including the book notes for From Fatigued to Fantastic and Pain Free 1-2-3.
Topic: How to find an ILADS-educated lyme literate (LL) professionals in these areas:
Naturopathic doctor (ND); Acupuncturist (L. Ac.), a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, . . .
. . . Holistic MDs, and also Doctors of Osteopath (DO) and Doctors of Chiropractic (DC), etc.
�� Includes many professional links, articles and books on complementary / integrative methods - & RIFE links -- all by LL authors.
Also included are basic links explaining the principles of herbal medicine.
BODY WORK considerations (geared to lyme patients) are discussed; with links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I am 20 years old and understand your pain It is so frustrating to be hit with chronic pain when you are so young. What helps me now is high doses of gabapentin/Neurontin (they are the same thing- gabapentin is the generic for Neurontin) and Cymbalta for the joint/muscle pain. I also take an Ativan to help the anxiety and muscle tension and a baby aspirin to avoid migraines. For some reason, the fibromyalgia medications help with the Lyme symptoms (I was never diagnosed with fibro).
-------------------- Contracted Lyme 1999. Diagnosed January 2011.
"The seed of suffering in you may be strong, but don't wait until you have no more suffering before allowing yourself to be happy." � Thich Nhat Hanh Posts: 64 | From North Carolina | Registered: Jan 2011
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I had that kind of bone-crushing pain when I was 23-27. I got bit by a dog on my wrist, but it was my whole left side that was affected by what was called "chronic reactive arthritis"
I was on percocet for years.
I went back to college to study chemistry and nutrition, looking for something to relieve my pain.
I tried multiple combinations, herbs, supplements.
My method was to find out the toxicity level of a substance. Stock pile a supply and ramp up to a ridiculous amount... sustain that high dosage for 5-7 days and see if there was a reduction in pain.
It took me years to find what worked for me. I use a high quality grape seed extract called Proflavanol from USANA--
I am currently trying other brands (to try to reduce cost) with very little success. I can get relief... I just have to take a ton! Some brands, I have to take 27 pills a day to get rid of the pain.
My son does not get relief from his pain with this product... and he does not muscle test well for it.
Everyone is different. Muscle testing rules.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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It is so frustrating to be hit with chronic pain when you are so young. What helps me now is high doses of gabapentin/Neurontin (they are the same thing- gabapentin is the generic for Neurontin) and Cymbalta for the joint/muscle pain. I also take an Ativan to help the anxiety and muscle tension and a baby aspirin to avoid migraines. For some reason, the fibromyalgia medications help with the Lyme symptoms (I was never diagnosed with fibro).
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