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Posted By : saozemko - 8/15/2017 6:32 AM
Hello I had been posting in the lyme forum because I was diagnosed with Lyme and bartonella (tested positive for both) a little over a year ago. I have been on antibiotics for a year trying different kinds to see what works best. Over the past few months I have developed stiffness and pain in my joints. My hands are stiff (esp when I wake up at night I can barely move them and if I do without really noticing it is very painful), as well as my fingers and wrists. When I get up after sitting down I tend to limp because my knees and ankles hurt and are in pain. I also have pain in both elbows constantly, the inner elbow. When I touch them its very painful and when I lift anything or use my muscles it radiates in each elbow. I cant even lift one of my 7 lb cats without pain.

I saw a rheumatologist who did bloodwork and did not test positive and they stated that they could not see any visible inflammation, told me it was fibro. Yeah because tha tmakes sense when I wake up at night barely able to move I am so stiff and my pain is literally symmetrical same on both sides always. They gave me some diclonofec sodium before I got the results and that helps a ton, but I was only given a few and they refused to refill it. I spent sunday cleaning all day and yesterday and today I am paying for it with such pain and stiffness, I broke down crying yesterday.

My lyme doctor said it could be the lyme or bartonella and had added Ceftin to my current antibiotics of Rifabutin and Biaxin but a month later nothing.

My aunt has RA and she said it sounds like it but if the rheumatologist says no and regular doctors will tell me to see a specialist what do I do.. I can barely work and all I do all day is type and write.. please help :'(

Posted By : Indu - 8/15/2017 4:57 PM
Hello Saozemko, sorry you are not feeling well. Did the rheumatologist check the Anti-CCP levels (through a blood test)? Perhaps asking a different doctor for a second opinion will be helpful.

Hope you find some relief soon.

Posted By : Alice22 - 8/15/2017 9:28 PM
Hi Saozemko, Your symptoms sound like RA to me, but I've heard that Lyme and RA have similar symptoms so it could be the Lyme's disease too. I agree with Indu's suggestion that perhaps it's a good idea to get a second opinion.

I don't understand why your doctor won't renew your pain medication. I would get on the phone make a stink about that! If that doesn't work find another doctor who is more empathetic and will treat your pain, or go to a pain specialist.
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me sick. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms, and turmeric, krill oil, and Methyl B12 daily. (Discontinued CoQ10 d/t terrible heartburn).

Posted By : saozemko - 8/17/2017 6:39 AM
I just don't know what to do I am so frustrated sad I cannot go to another Rheumatologist 1) the money with insurance was crazy and 2) the wait at other Rheumatologiest in an hour radius from me is 6-8 months minimum. I broke down crying the other day because I feel helpless, I don't know where to turn, just finding a random PCP the likelihood that they will listen to me is slim to none. I have had the lyme for over a year as well as the bartonella and these symptoms just started a few months ago. I do not know if any of the antibiotics I am on (Rifabutin, Ceftin, and Biaxin) could cause this pain, though the Ceftin was added a month ago to see if this pain was the lyme and nothing is better.

When I go outside in the heat I feel better, now the pain does not completely go away but its better. I don't know what to do. :'( I just want to literally cry right now.

Posted By : Indu - 8/17/2017 3:18 PM
Sending you a big virtual hug, Saozemko. I recognize how frustrating it must be for you. If it feels better when you are outside, perhaps try to schedule some timeframes every day when you can be out for a little bit, though I know how tough it is to do that as well given other commitments. Hope you feel better soon.

Posted By : Alice22 - 8/17/2017 8:09 PM
I hear your frustration, and I am sorry for what you're going through. Saying that "just finding a random PCP the likelihood that they will listen to me is slim to none" shows you are very discouraged. But there are good, caring doctors out there. Do some research online and try to find one that has a good rating or ask friends or family to refer one to you. You will need a doctor to help you so I would not give up on that. In the meantime if the heat helps you to feel better, maybe in addition to going outside you can get a heating pad, take hot showers, take over the counter pain meds, rest, and keep trying to get an appointment to see a doctor. Also some pharmacies have a clinic - CVS does where I live. I don't know if they prescribe medication but they might. It wouldn't hurt to call and ask. And see if there are any walk in clinics in your area. But also make an appointment with a rheumatologist, even if you have to wait several months. But do your research first to make sure you get someone good! And tell them to please call you if they have an unexpected opening or cancellation and can get you in sooner.

Post Edited (Alice22) : 8/17/2017 8:12:03 PM (GMT-6)


Posted By : saozemko - 8/18/2017 6:32 AM
Alice,
I saw a rheumatologist at UVA, with my insurance I now owe them 500 dollars. They said it was fibromyalga, that I had no visible inflammation and that all the bloodwork came back normal. So basically I feel like I was blown off and don't know what to do. My lyme doctor hates Rheumatologists stating that they don't know what they are talking about. I am broke and can't keep searching for someone to help me....

Posted By : saozemko - 8/18/2017 7:30 AM
I called the rheumatologist again today and they stated that since my RA factor was low and my two levels of inflammation were low that its not RA, that they cannot prescribe me more diclonofec. They told me to see my PCP which I have not seen in years because every time I'm sick hes booked and I have to go to a walk in clinic. I just want to cry... :'(

Posted By : Alice22 - 8/18/2017 11:25 AM
I would find a new PCP. What good is he if he's never available when you need him? Find a doctor's office that has a nurse practitioner and/or PA (Physician's Assistant). They are often as good as doctors. That way if you need an appointment right away and the doctor is booked they can usually still get you in to see a PA or NP. Do you know if your symptoms are definitely Fibro and not Lyme's? As an aside, several years ago I was diagnosed with fibromyalgia and the NP suggested I go on Cymbalta, which is an antidepressant but is also supposed to help with fibro pain. I elected not to but just wanted to let you know that that is supposed to help. Maybe when you get in to see a doctor you can ask about that.
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me sick. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms, and turmeric, krill oil, and Methyl B12 daily.

Posted By : Scott007 - 8/19/2017 1:48 AM
Saozemko,

It would be best to ask your doctor to switch to a safer medication. Diclofenac has two "black box warnings" on the FDA's drug product sheet. In case you don't know what this is, black box warnings are the strictest labeling requirements that the FDA can mandate for prescription drugs. They highlight serious and sometimes life-threatening adverse drug reactions within the labeling of prescription drug products. The FDA says that pharmacists and physicians are supposed to inform the patient of black box warnings, but sometimes do not.

You may want to ask your doctor to get tested for "calprotectin" in the feces. It is a marker for colon inflammation and may enlighten the cause of your condition.

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