posted
I have been getting pretty discouraged lately with my lack of progress in getting to remission. Let me give some brief background information.
Bit by tick April 28, 2010 - Had rash. Took 2 weeks of amoxicillin starting about 5 or 6 days after (not long enough obviously). Thought it was ok then about a month later symptoms started.
Joint pain - started about a month and a half after bite in hands.
Headache - started about 2 1/2 months after bite. Have had it nonstop ever since. Got on Doxy for about 3 months once this started.
Had a positive Western Blot IgM for bands 41 and 23. IgG was negative. Quest labs.
My main ongoing symptoms are joint pain, headaches, neck pain, and fibromyalgia type tendon and muscle pain. Achy tendons and muscles that are very tender to pressure, sort of like they are badly bruised.
*Doxycycline (7/27/10)- about 3 months and stopped. *Flagyl - have pulsed it for a week at a time about 3 times (with doxy and ceftin). *Ceftin - (10/8/10) have been on it about a month now. *Plaquenil - have been on it about 2 weeks with ceftin. *Tons of vitamins, minerals, probiotics, and herbs that I've found through my research.
I eat very low carb. No sugar or simple carbs at all. Only drink water or lemon water. I eat lean meats, non starchy vegetables, and alot of almonds mostly.
I play guitar as a hobby and it has been killing me that I can hardly play anymore due to hand/wrist/muscle/tendon pain.
One thing I'd like to know is what exactly is happening to cause this pain. Is it bacteria eating collagen in the joints and tendons?, bacteria burrowing into the collagen and causing an autoimmune response where my body is destroying my own tissue? Is it possible for this to heal or is it ruining my joints.
It feels like my joints, finger joints specifically, are weak laterally. Meaning, if I put pressure on the joints from the side it hurts much more. For example if I try to open a jar or something like that. Areas around the joints feel tender and bruised on the bone. I assume there is a buildup of bacteria there. Around the knees, elbows, shoulders, finger bones, pretty much any joint. If I press down and massage the bone around a joint it will hurt.
I've been to 3 different Dr's. 2 normal general practitioners. First one completely dismissed it as lyme because I didn't show positive on my Elisa. 2nd one was aware that lyme is a real thing and I showed him the burrascano guidelines but he still thinks staying on abx for an extended period past a few months will do no further good. The 3rd Dr is a rheumotolgist and she's the one that gave me the Ceftin and Plaquenil. She was scared to death about losing her license treating me I could tell. And she was outrageously expensive. $1800 for one visit, no insurance accepted. I paid it but it really killed me to give her that check for 30 whole minutes of her time. I have to work about a month to pay for that!
I have spent countless hours reading peoples posts on lymenet and researching lyme and co's in general. People have been so helpful on here.
Has anyone else here had similar arthritis/fibro/muscle/tendon pain that resolved? It's hard to determine whether it is physical damage taking place in joints, muscles, and tendons or if it's nerve type pain. In between my knuckles is always tender and painful. If I make a fist and push down in the area between my knuckles it's guaranteed to hurt all the time. And other places too like knees, wrists, and elbows, etc.
It breaks my heart to think that I'll never be able to play guitar again Any other guitar players here with lyme?
Thank you for taking the time to read this. I'll try to make a list of all the supplements, vitamins and minerals, and herbs I've tried.
I also have these same musculoskeletal issues (not much neuro) stuff and also wonder whether the joint pain is inflammation from infection, inflammation from die off or an autoimmune process within the body triggered by lyme.
Posts: 749 | From State full of ticks | Registered: Dec 2008
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posted
Maybe you have a co-infection that is interfering with the treatment-- maybe Babesia. Babesia can cause the headaches.
My son has very little neuro, pain in the rib joints, hip flexors and shoulder tendons. My family (my brothers) are loaded with reactive arthritis. So yeah, it's the million dollar question... does Lyme start an autoimmune process that won't go away?
Well, until they come up with proof, and something that actually fixes the socalled "autoimmune" process, we've decided to keep trying to go for finding the abx that gets rid of it. My son has babesia, so I'm hoping that treating that will be the breakthrough we need.
Our LLMD is a rheumotologist. She's a well-known LLMD in the area... it's basically all she does. It might be worth the trip.
Mary
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Yes, with the right care, you can get over the pain. You absolutely need a Lyme Literate Medical Doctor (LLMD). I would not waste any time messing with other doctors who don't understand or believe.
Yes, borrelia does damage tissues. Many things are going on that can cause pain. Inflammation is a big cause of pain. There is also a problem where tryptophan can create toxins instead of serotonin. My LLMD considers the toxin that is created to be a marker for high pain levels.
I was infected for decades. By the time I got treatment I was in horrific pain all over my body. It hurt to move. With treatment (4+ years) my pain is down by 70% and many other symptoms are greatly improved or gone. I expect more relief when I get on IV.
You are lucky to catch it so early but I hope you get an LLMD and get on approprate treatment immediately.
Terry I am not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Reduce your inflammation and pain with antioxidants and systemic enzymes.
Magnesium Fish oil Systemic enzyme therapy...google for info
LED light therapy is useful to reduce inflammation and pain.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Here's the vitamins, supplements, and herbs I'm taking. I just heard these things recommended and wanted to try them. I think magnesium and bromelain seem to help.
Glucosamine - NOW brand MSM - nature's valley SAM-e - Jarrow Genacol collagen - Genocol brand Acetyl-L-Carnitine - NOW brand Alpha Lipoic Acid - NOW brand Grape seed extract - NOW brand Bromelain - NOW brand Serrapeptase - Dr's Best brand Ginger - New Chapter brand Curcumin - NOW brand ADAM multivitamin - NOW brand Magnesium Malate - NOW brand Potassium - NOW brand B-Complex - nature made Flaxseed oil - jarrow Vitamin C - Ester-C Green Phyto Foods - NOW brand Garlic pills - probablly doesn't do anything, trying it anyway. Milk Thistle - natures bounty NT Factor - NTI brand Florastor - probiotics Artemisinin - NutriCology brand Samento - nutramedix Burbur - nutramedix Teasel root tincture - lady barbara brand Drainage-Tone lymph drops - energetix brand Cordyceps - eclectic institute brand
Along with these antibiotics: *Ceftin (2 x 500mg per day) *Plaquenil - 1 pill per day *Flagyl - 1 week pulse of 2 pills a day every 3rd week (came up with this schedule on my own, don't know what would be ideal really).
I'm trying to do everything I can to get better. It just doesn't seem to be working too great. I mean, I have been able to go to work and survive, but my quality of life is far from ideal.
Other than a blood test, how can I tell if I have babesia or bartonella? I tested for co-infections with quest labs and they didn't show any positives. I know how useless that test was but the Dr refused to let me send my samples to igenex. I had the igenex kit, a check written, and all the paperwork filled out. I just needed them to draw the blood and I'd do the rest. They didn't want to do it because they have lab techs there that work for quest and they wanted to get paid. Ridiculous.
Are there any clear symptoms that are specific to babesia and bartonella and NOT borelia? Every time I read peoples symptoms of bab or bart they overlap with borelia (which I have, WB bands 41 and 23).
Thanks for your input,
WG
Posts: 92 | From Georgia | Registered: Aug 2010
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quote:Originally posted by marypart: Maybe you have a co-infection that is interfering with the treatment-- maybe Babesia. Babesia can cause the headaches.
Diito. You can't get over "Lyme" if you have a coinfection. You can get one, two or 10 coinfections with one tick bite.
Find a REAL LLMD and be evaluated through Igenex Lab for coinfections. Even then, your test could come back negative and yet you could still have them!!!!
Test for babesia and bartonella for sure.
My husband is a musician and I understand how it would be devastating to not be able to play your guitar! My condolences!!
Get to a good dr and you will have a chance at beating this.
( I'd be willing to bet that the rheumie will eventually "bail" on you and try to give you prednisone or some other RA drugs which will make your Lyme worse. )
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
You'd think that Dr's treating people for lyme disease would do their homework and become educated on what they're doing. It's just amazing to me that they don't. I've been to 3 Dr's that are getting paid tons of money to help people and I know more than they do about lyme. By the way, I live in GA and there are NO LLMD's around here.
Posts: 92 | From Georgia | Registered: Aug 2010
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posted
Yes, GA has few drs who can treat Lyme. You will need to travel in order to find a good dr. Have you received the list in Seeking a Doctor for Georgia??
I came back to say that I was glad someone's supplement list was as long as mine!!
and to suggest that you try Jarrow brand Glucosamine, chondroitin, MSM formula for the pain. It really helps me.
I also take the curcumin. Can't say it helps as much as the Jarrow though. And you'll probably save money by purchasing the combined formula.
posted
I'm a little embarrassed to be commenting here as I've only been in treatment since March myself, but I didn't see light massage and sauna mentioned here yet. I am getting massage for lymph drainage weekly, and the therapist puts me in a FIR sauna for half an hour each time. This is SO wonderful! You have to build up little by little on the sauna but it really helps my pain.
I think the reason the massage and sauna helps me so much is because it's helping with detoxing, so maybe that would help you too. It looks to me like your list of things includes several that might be causing herxes so maybe you do need more detox.
Have you tried chlorella, or something else designed to help detox? When I started taking chlorella I could feel the difference immediately. Also I am taking EDTA (Detox Max Plus) while on Flagyl and this stuff works like magic for me.
The other comment I wanted to make, based on my VAST experience with this disease (!) is you have to give yourself lots and lots of time to kill it off, to detox and to heal. Your body can do this, I am convinced of this, but not necessarily quickly.
I had one shoulder with such severe pain I thought it was permanent. Now that pain is disappeared and the shoulder feels like it never had anything wrong with it. New pain in my hip now, pretty bad, but I am confident this is transitory.
Keep up the good work, you will recover! (I am telling myself this, too.)
Posts: 261 | From Nebraska | Registered: Jan 2010
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posted
Sillia, I've read mixed reviews about chlorella. Some saying that it just moves heavy metals around in your body. Been scared to try this. Although that Green Phyto Foods I take has some in it.
WG
Posts: 92 | From Georgia | Registered: Aug 2010
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posted
My heavy metals didn't seem to be elevated according to the test I took, though I understand that can also mean they just aren't releasing. So I decided not to worry about it. I'm going more by how the chlorella makes me feel (better) and thinking that it is helping me detox SOMETHING because of that.
Look for GiGi's posts on chlorella here, they were helpful.
Posts: 261 | From Nebraska | Registered: Jan 2010
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posted
That blend sure seems to have a lot of good things in it! I can't comment as I haven't taken such a product myself.
As for the chlorella, yours has 300mg per day. I'm taking 5 grams per day, sometimes more depending on symptoms.
I don't know enough about this to suggest that chlorella might be appropriate for someone else, so I'm not trying to push that. I do think though that you probably need more detox of SOME kind. The aches and pains are a result of toxins.
Posts: 261 | From Nebraska | Registered: Jan 2010
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posted
I also have constant headache for 2 years now,its terrible and Im still trying to solve .
Im very confused at this moment too,as I resersched so far,some people said that you won't get well only on those abx,they said natural rount is working better than those drugs.
Posts: 158 | From pittsburgh | Registered: Aug 2009
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posted
I assume my headache is caused by bacterial infection around the meninges, the membranes that surround the brain, and from the neck and head muscles being infected and tensed up. I wish there were some glasses you could put on that would illuminate all the infected areas in your body, kind of like a black light does. I bet it is all over the place. I feel like it gets into my tendons, cartledge, muscles, joints, and coats the bones.
Posts: 92 | From Georgia | Registered: Aug 2010
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
You might want to give Zyflamend by New Chapter a try. It's an all natural anti-inflammatory - sounds like that's the type of pain you have. Zyflamend also promotes normal cell growth. This stuff got my off Rx NSAIDs. I swear by it. I continue to take it even though I am well because I damaged my knees as a teen. Comes in handy too for menstrual cramps.
Veterinarians have been recommnending it for pets as of late as well.
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
I just made an appointment with my first true LLMD for 11/24. I'm excited about it. It's a 427 mile drive one way but it's worth it to me if they're truly good, which someone on here says they are.
Posts: 92 | From Georgia | Registered: Aug 2010
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quote:Originally posted by wgshuckers: [QB] I assume my headache is caused by bacterial infection around the meninges, the membranes that surround the brain, and from the neck and head muscles being infected and tensed up.
Don't assume! It could be babesia.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Do most people go after babesia first? Or do they attack babesia, borelia, and/or bartonella at the same time?
Posts: 92 | From Georgia | Registered: Aug 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Good luck at your appointment tomorrow wgshuckers!!!
Give us an update.
-------------------- 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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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I've been ill for a long time. Good luck with trying to beat Lyme with the antibiotics & supplements. They didn't work for me but you were lucky to catch it early. I was ill for 9 years before I started to treat for Lyme.
I just wanted to mention that Excedrin actually works pretty well for me when I have a headache. I tried expensive prescription meds for migraines but the Excedrin actually works better for me.
You may want to try it. Hang in here. Sounds like you are doing all the right things.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I went to my first LLMD appointment last week. It was a 7 hour drive one way but I guess it's worth it. I added one more abx to my collection. I was already on Ceftin, Plaquenil, and Flagyl pulses. The Dr. added Rifampin to be taken twice a day. I just started on it yesterday so I don't really have a review of the effect yet. She wanted me to pulse the flagyl 3 days a week; I had been pulsing it for about 7-10 days on then 7-10 days off..not sure if 3 days a week is enough but I'll trust the Dr. for now.
They took blood for some tests (liver, kidneys, and something else can't remember) and after 10 days I STILL have bruising and tenderness from where the needle went in. I've had blood taken before and it never had a lasting effect like this. I suppose it could be the lyme causing my body to have a healing problem or something. Anyway, just wanted to give you an update.
WG
Posts: 92 | From Georgia | Registered: Aug 2010
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posted
I'm a guitar player too and my hands are weakened by the arthritis. They fatigue quickly and certain chords are now difficult to hold. There is a tendon on the outside of the wrist that also is very tender and on certain chord changes it causes a sharp pain which pretty much makes me look for another song to play.
I've had some days where it helps. Like you I have a lot of problems in tendons and joints and haven't found my solution yet despite over a year of trying. Going on Rifampin with Tetra this week.
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Any other guitar players here with lyme?
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