I've been seeing my PCP and a rheumatologist for the last year for chronic joint/muscle pain, and they haven't been able to find anything wrong with me, or suggest anything to help, so I'm turning to you guys before i go and spend $500 that I don't have on an LLMD.
i'm going to try to be as brief, clear, and concise as i can, but i already know it's going to come out lengthy and maybe slightly hard to follow
I was diagnosed with LD in 2008, about 5 months after my tick bite, which was not bullseye shaped. At that time I was given 1 months doxycycline, which I didn't take perfectly reguarly(didn't know anything about antibiotics at the time unfortunately).
My symptoms at the time were crippling pain in my right wrist and elbow, both felt like they were broken, and i couldnt straighten my arm. This jumped back and forth between arms, but after the month of less than perfect abx use, the pain went away.
I had already had knee pain before this, but now as I look back, it definitely has been worse and more limiting since the LD diagnosis.
fast forward to May of 2015, I got a nasty infection on the back of my leg, which seemed like a spider bite.
I never felt the bite, and the infection/rash was nothing like my original, it started as a nickel-sized red lump, which eventually turned black and was surrounded by a much larger red infection. the black part eventually burst on it's own.
somewhere during the course of this infection I also noticed that my lymph nodes on the back sides of my neck, near the bottom of my hairline were swollen.
now, i had just gotten into rock climbing around this time, and shortly thereafter developed a crippling pain in my right shoulder which left me unable to use it at all, and even sitting on the couch resting it, it still was extremely painful.
this lasted about a month and I saw it as a climbing injury at the time, since LD was far from my mind by now.
i was given antibiotics (10 days doxy) and painkillers and told to rest. the terrible pain eventually went away with ~2 months of no physical activity, but it was replaced by a chronic aching pain in both shoulders and neck, which i'm still dealing with today.
in addition, when the infection on the back of my leg went away, that ankle swelled up and became stiff. the swelling eventually went away, but the stiffness didnt, and it even migrated to the other ankle.
now both ankles feel arthritic and hurt when i point my my feet down, or flex them back.
I have told my doctors, who as of now have basically given up on a solution. I've told them that I think it may be chronic LD, but of course they responded that it's not, and that chronic LD is a controversial area where they will not help me.
My confusion comes from the fact that I don't exhibit many of the more severe symptoms that I see people posting about on here. I know everyone is different, but i think I have only 3-4 of the ~80 symptoms i find online.
So far as I can tell, my only symptoms are the joint pain I mentioned(which is relatively mild, but always present), and muscle soreness.
I ride my bike a lot and try to stay active but I notice that my muscles never seem to recover fully, my legs are almost always sore. even after 6 months of steady riding, my legs are always very sore the day after a ride.
It's tough to tell whether I have brain fog or not as I am usually a regular marijuana smoker.
I stopped about 2 weeks ago to see what a totally sober brain feels like, and I've got to say I do feel foggier than ever, and have trouble sleeping, but i can attribute this to my body detoxing from so much THC.
So, as of now, i'm studying up on Dr. B's protocol. I've given up gluten, alcohol, most but not all sugar,I'm taking his top 8 required supplements, and got the fancy toothpaste, etc. It's only been about a week so far, but I'm sticking to it, and i'm hopeful!
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(breaking up a couple paragraphs for easier reading for many here)
[ 01-29-2016, 02:16 PM: Message edited by: Robin123 ]
Posts: 3 | From Philadelphia, PA | Registered: Jan 2016
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I would say it is extremely likely that you have chronic Lyme, especially given your history with Lyme, poor treatment, and active outdoor lifestyle.
Of course I am not a doctor so I cannot say for sure, but for most, Lyme is always with you, and even if you do well with the initial treatment, you may always have aches and pains that come and go.
as far as not having "all of the symptoms" Lyme is a very tricky disease and theres really no cookie cutter symptoms that says if you have it or not. Some people suffer far worse symptoms than others.
I understand your concern with investing in an LLMD. I was there too in the beginning, but I was literally given no choice, when a month after my initial 28 days of Doxy was out I could not walk and no mainstream doctor would continue to treat me for Lyme.
You will most likely get worse initially when treating for Lyme so if you feel that your symptoms are manageable and not affecting you too much then you will want to keep in mind that you will not feel so great initially.
It does sound like you have times of crippling pain though, and my antibiotic treatment has definitely helped me with that...although is has effected me in other ways, so you must weigh the good with the bad
Posts: 66 | From New York | Registered: Sep 2015
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posted
Your chronic neck and shoulder pain raises a red flag for me, as that was my first symptom, which got progressively worse.
Also your arthritic joints, and many other things you describe here are in the ballpark, so to speak, of Lyme.
I take turmeric capsules to reduce joint and muscle pain. It's a simple experiment you could try if you want. I get the powder in bulk at the health food store and dip empty 00-size capsules into it. It works pretty quickly for me.
We're all different in how we present and how we respond to any remedy.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
How were you diagnosed? If you had a Western Blot back then that was positive, there's no sense in doing another one. A WB shows exposure. If you've been exposed and have symptoms, that's diagnostic of Lyme Disease.
Since you're an mj smoker, I'd look into cannabis cures for Lyme. There are probably a few threads on it if you do a search. I know nothing about it, just that I've seen it here.
You also might look up Stephen Buhner, an herbalist who has written about Lyme and herbs. If you're not having disabling symptoms, that might be the way to go to get some relief.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Tricky, but at least a LLMD will be able to determine if you do have Lyme and/or another tick-borne infection.
Most LLMDs take a 'functional medicine' approach that takes multiple aspects of the patient into account - including things like environmental, genetic and dietary factors.
I tested positive for Lyme, got better after a month on Doxy, but relapsed six months later...only didn't know it was a relapse.
Even after tons of blood tests the doctor I had been seeing had no idea what was wrong with me.
Long story short, I finally went to see a LLMD and learned I not only still had Lyme but also had 5 other infections, 7 nutrient deficiencies
and several other issues I never would have known about otherwise. LLMD was more equipped to find answers and provide me with effective solutions.
Per mj usage - strains high in CBD have been shown to reduce inflammation and have personally helped me a lot with joint and muscle pain.
My brain fog was there long before I ever used mj! In fact, ironically I have a longer attention span and tend to get more work done on high CBD mj,
but that's more because I have significantly less pain. That said, I don't use it often and I take it orally in tincture or capsule form.
Several folks I spoken with say CBD mixed with both CBN & THC works best for them for pain relief. To each his own.
Pot and it's effects can vary greatly depending on batch and it's chemical make-up, so I think like any medication, it's important to have a healthy respect for the herb you're taking into your body.
Also pot can have estrogenic affects on the body, so it is good to take breaks from it and provide yourself with some detoxing and liver support.
All the best to you, hope you find some answers.
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(breaking up the post for easier reading for many here)
[ 02-04-2016, 05:54 AM: Message edited by: Robin123 ]
Posts: 114 | From California | Registered: Jan 2016
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