I had Lyme so bad, I almost died. I couldn't walk, I stuttered, and was in severe pain all the time. This was about six years ago. The Doctor suspects that I had this my whole life, but that it came out during a tramatic personal event that occured. Anyway, I decided to take a holistic approach. Initially, I was on ton of antibiotics (including a pic line) and in bed for a few years..very, very sick.
Things got better, but then I had a set back, and broke my back during an accident. Between the Lyme, and my back, I was in so much pain..I just couldn't take it anymore. A trusted friend suggested a doctor for my back whom put me on a painful work out regimine (physical theraphy). I really disliked it. Truth is, I started to feel better! My back was doing great, and I was off all my pain meds. Lyme was a come and go thing, other than some bad days, and the word findining, and memory issues. These interfere with my job, but that is another topic.
I then joined a gym, this was about six months ago? I felt even better! Now, I am feeling really sick again. I feel tired, my joints (knee, and hip) ache and throb, and I feel frustrated over this. Why is it that when I do physical acitivty (including yoga) I feel so much pain that I have to go to bed with a heating pad? I mean, I can't walk the pain is so bad. I can't get an apt. with the doctor until March, and I don't think it's anythign serious..but what i want to know is, what's happenign to my body? Should I stop exercising? that's just crazy if I have to. I'm just trying to get healthy. I thought the more weight I lost (40 pounds now) the better I would feel. Why is this happnening?
You may be having a flare up of physical symptoms. Since you are still having occasional bad days and problems with word finding and memory (I'm with you on that!), it sounds like you might still have a lurking case of Lyme that has decided to annoy you in a more obvious way.
I know many people here feel better with exercise, and I like a good walk, but there are times when exercise is the last thing I can handle. There's got to be a balance between sweating out the bugs while stimulating your immune system with exercise, and on the other hand being in so much pain and maybe (?) damaging your joints by exercising while they are swollen. I don't know if that could be the effect, but my theory is that when I'm in pain, low and slow is the way to go. Above all, don't blame yourself! Just exercise enough to feel better, and on some days that will be more than other days.
Can you ask to be put on a cancellation list at your doc's office, so if someone cancels, they will call you? In the meantime, have you looked into herbal treatments? I always used to roll my eyes at stuff like that, but I'm a believer now. It really can help. There are herbs to help support your immune system, and some that are supposed to directly suppress Lyme -- not cure, but suppress. And if you have active Lyme, you may be getting muscle cramps from low magnesium since the bacteria use it in their reproductive process. It helped me a lot, and I still take it.
Remember that no one here is medically trained that I know of (I'm sure not!), but maybe some of these approaches could be helpful to you too. Be sure to check with your doc with any questions.
Let me know what you figure out...... I was diagnosed around 7 years ago with lupus but now seems so much like lyme and I didn't start getting really sick until I started exercising and riding my bike 4-5 times a week while taking whey and soy protein isolates...... I have been sooooooo sick the last 2 months you can look up my old post to fin out details but now after I excerise I wake up the next day shaking 10 times worse with the swelling of the muscles in my neck/throat wrose as well....... I just don't understand. I recently also just had this dizziness I posted under subject of bladderwrack. Let me know your thoughts and if you find anything out. *hugs*
thank you for replying. The only herb I know of is Grapefruit seed extract. Can you tell me the others? I like your advice very much.
I didn't realize that lack of magnesium was an issue. I don't eat much, so I'm sure I'm lacking in it. My physician did some blood work, and I was very low on calcium, so she told me to take tums. I suppose magnesium would tie into that.
I do feel better today, and want to go to zumba class, but maybe just a hike in the woods instead.
What kind of magnesium, and how much? And please, what herbs?
If you google/search "lyme herbs" you will find information about the different approaches. Everyone is different because of the different coinfections we each have and the interaction of various herbs and meds with our particular metabolisms. Try different things until you find a combination that works best, and keep your doc in the loop so s/he knows what you're taking. Herbs have side effects just like pharmaceutical drugs and may be contraindicated in certain people.
I was warned by an MD not to take too much magnesium because it can damage the kidneys, but read elsewhere that you'll get diarrhea before that happens. I don't know, and you should check with your doctor. Everyone's body and metabolism and immune system is different. I also read that any form of magnesium ending in "-ate" is easier to absorb: magnesium malate, orotate, aspartate, etc. There is one brand I like that has all three in one capsule.
I was finally diagosed with Lym about 12 years ago, two years after I started my new career and was working seven days a week, 12-hour days. Finally about four years ago I was diagnosed when my knees and joints all over my body hurt so bad, I could barely walk. I had IV antibiotics via a pic line, was very depressed because I love to work. Finally I'm at the point if I don't get stressed out or overwork myself, I stay fairly well. The biggest problem is working out. I love working out, but I have to be very careful or I'll get sick the next day, like I have a little flu. It's so frustrating. I'm 58 years old but really remember being sick off and on since I was about 15 or 16 with urinary tract infections, had a deformed kidney removed. It's hard because I have a twin sister who works out and keeps her figure and is always mad at me because I can't get around like her. I had a knee replacement about six months ago and now the other knee is hurting and will have to be replaced. I may try to get disability and just enjoy life for once.
How long was your Rocephin treatment? Did you see a Lyme Literate Medical Doctor? I know Lyme arthritis can cause permanent damage, but do you think you might still be infected? It could be worth your while to go to an LLMD as Jackie suggested.
Maybe I should go to a lyme specialist. My rheumatologist who was the one to test my joint fluid and finally was able to find out it was lyme, did a second test of the fluid after a month on the IV antibiotics and it came out negative. But unfortunately the damage had been done to my knees I know there's supposed to be a great doctor in New York, which is about 3 hours from Washington DC, so I may have to do that, especially since right now after two rounds of antibiotics and Prednisone I still have inflammation in my sinuses and even my glands in my throat. I'll wait and see what happens. It's definitely not the flu. Thank you for your post.
In your situation, I would indeed find a Lyme specialist for a second opinion.
There are some specialty MDs who in particular have fairly closed minds about diagnosing and treating Lyme, because they still stick with the now-outdated standards for diagnosing and treating Lyme and other diseases the Lyme ticks often carry.
There are especially two kinds of MDs who cling to the older view of Lyme as 'hard to get and easy to cure': infectious disease MDs, and rheumatologists. The mean well, but they have not updated their thinking for decades. 'Rheumies' tend to focus on joints, since that is their usual area of ailments they tend to, so I am impressed that your rheumatologist gave you a diagnosis of Lyme AND IV antibiotics.
Lyme needs a longer treatment time (months, not weeks) than most MDs will give, so when symptoms continue after a relatively short treatment like you had, the unenlightened docs will call continued symptoms 'post-Lyme syndrome', meaning you were cured, but your body is acting like it's still infected. The doc will say that you are cured because you had the standard course of antibiotics, and the only explanation the doc will likely come up with is that your immune system is over-reacting to the Lyme bacteria that are no longer there -- the docs skip right over the possibility that you weren't treated long enough, or for Lyme plus other infections that the Lyme ticks often carry!
This supposed over-reaction is sometimes called 'post-Lyme syndrome', and it is often treated with prednisone (as you were) or other steroids, to suppress the immune system reaction that is continuing. Lyme specialists, however, are more likely to say that you were simply not treated long enough to kill the Lyme, because Lyme needs more than a few weeks of antibiotics -- more like months. I was treated for Lyme and a co-infection (a separate disease the Lyme ticks often carry) for just over a year.
Prednisone and other steroids keep your immune system from fighting the bacteria, so the illness continues. I'm not medically trained, but based on what I know of the treatment approaches by Lyme specialists, they would test for other infections that the Lyme ticks may bring (based on what symptoms you have), and they would treat for longer than a few weeks, using antibiotics that are known to be successful in killing Lyme (which often requires two different antibiotics at the same time, for specific reasons).
I doubt you would need to travel all the way to NYC to find a good Lyme doc -- many Lyme docs don't advertise that they take a broadminded view, but they are out there. There is a voluntary group that Lyme docs often join called International Lyme and Associated Diseases Society (ILADS), and their members are all over the country. If you email them and tell them where you are and how far you can travel, they can email you back with the names of local Lyme docs. It doesn't mean you'll like the first doc you go to, but it's a good start. If you don't like the first one, go to the next one on the list.
The email to send a request to for a local Lyme doc's name is:
contact [at] ILADS [dot] org
and tell them where you are located and how far you can travel. They will email you back.
You don't need to tell your rheumatologist you are going to see a Lyme doc; sometimes docs get all huffy if you see another doc who has a different approach.
You will see the term 'LLMD', which is not an official title or specialty, but is just patient slang for 'Lyme-literate medical doctor', meaning one who takes a broader view of Lyme and its co-infections. No doc calls himself an LLMD.
Good for you for not giving up! It must be very hard after so many years of misery, but you have a strong spirit or you wouldn't be on this website.
Let us know how it goes, okay? (Remember not to post any doc's names here, because sometimes the local medical boards will harass a Lyme doc for taking a different viewpoint.)
You go, girl! You've got years ahead of you to be enjoyed! Stay in touch --
Ooops, forgot to say: you can also post another message here on this website to see if anyone can recommend an LLMD in your area -- but start a new message thread so it will not be buried under a long string of other people's old messages.
If you go to the top of the page here, you will see an orange-brown colored button to click on that says 'Post A Question'.
Click on that, and put a title something like: "Need LLMD in Washington DC area" or "Need LLMD near Richmond VA" or whatever.
Then put a short message of what you're looking for, and click to post the message. You're on your way!
I want to thank you sooo much for giving me your words of encouragement but also your knowledge. It has been so hard living with this and trying to work, as you know I'm sure. I'm so hopeful that I'll be one of the fortunate ones and can start living my life to the fullest. I truly had been thinking my life was over at 58, seriously. You gave me a fantastic gift, "hope."
I will keep you posted. Again, thank you!!
You're very kind, thank you -- but it's a group effort here, truly. When I found this website 5 years ago, I was in a deep deep hole. We all help each other.
Long before I got sick, I had an old friend in another part of the country who mentioned that she had been diagnosed with Lyme, and I remember thinking, 'Oh good, she'll be fine now that she knows what it is.' Little did I know that a proper diagnosis is the first (but most necessary) step in getting a handle on Lyme and its nasty little buddies.
People here helped me enormously, and still do -- we're all in this together. Now if we could just get ALL the docs on the same page, we'd be in business!! Still working on that one ...
Keep us posted, be ready for course corrections if needed -- but you are clearly strong in spirit to have gotten through all this for so long, so I know you can do this part, too.
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