They have a lot of good info there about parasites. They also have a medicated skin cream and herbs for pain,
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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posted
to be honest...that site overwhelms me
Posts: 48 | From San Francisco, CA | Registered: Mar 2009
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btmb03
Unregistered
posted
I'm sorry you're suffering so much. I have read others on this board who say that IV Rocephin really helped their joint pain.
Did a search here on LN reveal anything else? I too have horrible joint and muscle pain and am hoping that "something" I take will eventually help.
I think it's a long process for our immune systems to return to any kind of "normalcy" and am hoping with this "normalizing" might come a reduction in the above sx. Unfortunately you're not alone!! Take care!!
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I was on IV Rocephin for 6 mos and it didn't touch it. Maybe it worked for others.
Kali,
I used to feel the same way about being overwhelmed by the site. If you want, I can try and help you with it.
They have a phone # 662 345-0319 and you can just talk to someone there and tell them what you are experiencing. They are very nice and can mix up anything you want.
It's up to you, but if you want help, let me know,
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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posted
I have the arthritis really bad too. Especially my feet, ankles and knees.
Some of my other symptoms are improving but this is getting worse.
I am wondering if it's Bartonella? Do you have that?
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
My lyme induced rheumatoid arthritis and initially I was swollen in all joints. I was housebound.
Today I live a normal life and I ride horses. I have no limitations and very seldom have some slight joint pain but that is because we are still killing bugs.
The secret to my success was a little killing and a lot of detox. Lots and lots of detox. I don't detox very well and therefore, the die off from the bugs was causing inflammation in my joints.
A very nutritious detoxing diet is the foundation to all healing. Also, I received IVs of glutathione for the first year, now I use glutathione suppositories on an as needed basis.
I bounce on a rebounder. My doctor has me on many detoxing herbs to make me sweat. I am also able to exercise sufficiently to sweat. I was not even able to stand long enough to shower initially.
I've recently purchased a FIR sauna and love it. My doctor forbid it though until this year. I was so toxic, she said it would either send me to the ER or the psych ward. So be careful at trying new things on your own.
I am on several prescriptions to kill the bugs, but we go slow on the killing. My doctor does not like flares. I take many natural antibacterial, antiviral meds and homeopathic remedies. Homeopathic remedies have been extremely helpful as have certain abx. Currently I am on Mepron and zithromax for babesia ducani.
If you are having pain, it is inflammation and the inflammation can be coming from a number of sources. The die off is an obvious one. Some you may not be aware of inflammatory foods. Sugar and caffiene and foods with preservatives, MSG, etc irritate the gut and cause inflammation. Dairy causes inflammation in many people. For me, soy also caused inflammation.
If you have H. Pylori, it causes gut inflammation. Read up on Leaky Gut Syndrome. Heavy metal toxicity causes inflammation. Mercury is particularly known for causing joint pain. Molds cause inflammation.
There are so many possibilities to your pain, but it takes a medical detective to figure out which ones are troubling you. That is why I will only work with integrative doctors. They look at the whole body instead of just bugs.
These two organizations train physicians in CAM therapies. If your doctor is not trained in this, you should seek a second doctor to address these issues.
As my doctor said when I first met her (she is ILADS LLMD/Rheumatologist) "When you are this sick, it is never just one thing". She was right.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I was lucky that plain old Doxycycline (at 400 mg. a day) for many months took my incapacitating knee and hip pain away, with only a mild occasional flare now. I consider it really the only symptom in five years that resolved.
The muscle pain in my legs has not improved one iota for treatment for Lyme, Ehrlichia and Bart. Just started Babs treatment and we will see - because pain in the large muscles can be Babs.
I went to a lecture recently by a well-respected holistic MD in my city who specializes in pain management using alternative methods. He said clinical studies of ASU (Avocado soybean unsaponifiables) is showing success in treating osteoarthritis of the knee.
Granted, our arthritis is caused by tick-borne diseases, not wear and tear arthritis. But I'm curious whether it would help. ASU supplementation takes about two months for arthritis patients to see improvement.
I haven't tried it yet. I am hoping my mother will try it for her crippling knee pain.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
In the years when I was on antibiotics my arthritis went away but it always came back when I stopped.
Now, I'm off abx since 10 months and I control my arthritis by taking Boswellia serrata (incencse). I tried several brands and I found that for me only the original Indian Sallaki works.
I take 3 pills a day and with this dosage I don't feel my arthritis anymore. Boswellia serrata is a strong antiinflamatory and I don't have any side effects.
It's not a cure - only a symptomatic treatment.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I know this sounds crazy but the debilitating arthritis in my ankle seems to have burned itself out. I rarely feel anything anymore.
This happened even before I started on abx so I don't know what to think.
My MRI showed extensive arthritis and my ankle still clicks, but it never bothers me.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
iv ROCEPHIN took care of my 18 years of arthritis in 3 weeks. Bakers cysts that I had had for 15 years and were as big as softballs disappeared.
So yes, lyme arthritis can go away. Nothing has touched my headaches and headpressure....CNS symptoms.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
jill-i was dx w/ osteo arth in my 30's. i believe it was lyme-ketes eating the cartilage-but the xrays showed osteo-arthro scopic surg showed hardly any cartilage left
i kept going as PE teacher for 10 yrs with ibu and cosamine ds (the purple and white bottle was only one that worked)
then last year i had both knees replaced-no pain now. can't kneel and doing stairs is still hard-but at least i can walk with no pain
i still need thumbs done-have had osteo arth there for 10 yrs too
elbow, hip, and ankle pain never showed pos for osteo arthritis and went away with abx
i suggest everyone get an xray and if osteo shows up tx it...even to replacement...but you can keep going a long time with good qual cosamine
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
lpkayak,
Yes, I believe my mother's knee problems (and hip, spine, etc.) is due to tick-borne diseases, although she was also very athletic when younger so probably put the double whammy on her knees.
She's done the Hyalgen injections (I won't let her get steroids) and she gets temporary relief, but you can only get a few injections per year.
She uses a lot of natural anti-inflammatories, too, like turmeric, boswellia, but is now using a cane.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Have you treated for Babesia? I had the head pressure and pressure behind the eyes. It's gone away (mostly) with treatment for Babesia. The big difference was when I switched azithromycin for roxithromycin, 300mg 2x/day. I'm also on Mepron, high dose, artemesinin, boneset, teasel root, primaquine, doxycycline, ...and I think that's all right now.
Anyway, that's what helped me.
Posts: 975 | From California | Registered: Apr 2007
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posted
I've been getting this a lot in my right wrist lately. New for me. It's usually only in my hips, knees, ankles and feet.
Also I saw a comment about Bakers cysts. Is that from the arthritis part of Lyme?
Because both my boys have that. Plus their bones crack. My younger one complains of arthritis symptoms often.
I just hope it improves for them! Cause they are too young for that
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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