Miscellaneous Rumbles

Anyone else have chronic Lyme disease?

1

I was just diagnosed last friday.

I've suffered headaches, stomach issues, and muscle pain for many years... at least 15... and get tested every year for lyme, because I do alot of outdoor stuff. It always came back negative. FALSE negative, apparently.

I've had X-rays, MRIs, physical therapy, massage, myofascial release, even did some lifestyle/stress reduction stuff (which was badly needed anyway).... nothing provided any answers or helped. Well, the stress reduction and massage DID help, but never all the way... I felt like I was just keeping how unwell I was down to a manageable level.

I just had a more accurate lyme test done at one of the lyme-specialist labs, and it came back positive. As I suspected it would. they are now running my blood for all the co-infections that commonly go along with lyme.

Western medicine doesn't have much to offer, just a 28-day run of doxycycline, which I just started tonight. But as I research, I see it's already been found that CHRONIC lyme can survive a 28-day course of doxy. Researching what to do AFTER that... alternative treatments....

Just thought I'd vent here, see if anyone can offer any advice from their own experiences, as I feel like this forum is more FRIENDS of mine than other forums are, especially since I've met and played with a bunch of you.

2

Got nothing for you on Lyme Disease, but I'm sorry to hear you've been suffering with it for so long. Chronic mystery conditions are miserable even apart from their specific symptoms. Suckers wear ya right down. You get sick and tired of being sick and tired.

You get tired of even mentioning to others you're sick and tired. By the time you get through the indifferent machine of US "health care"'s front office and get to a doctor for your 12 minutes of divided attention, you feel stupid for getting passionate about the familiar old problem no one's been able to diagnose - or just mumble, practically apologizing for bothering him, and wondering if you aren't just hypochondriac. You finally get tired of hearing yourself, wonder if it's just the human condition and everyone feels some similar kind of hell (but different), and just isn't talking about it.

In that context, it's probably some relief just to have a diagnosis - and a course of action. There's at least a little vindication: "I told you there was something wrong with me!"

Lifestyle/mindfulness/meditation/yoga yeah. It's crucial to have them in your bag-o-tricks, because - as you say - they help keep the suffering (and its associated anxiety) down to one-day-at-a-time manageable levels. Over time, they do better than that, in a weird way - you don't get physically better, but you just accept it and don't care.

Kinda.

Anyway, let's hope your Lymies are vulnerable to the medicinal punch, and just go away.

I think you can feel free to vent. We're just a bunch of guys (of both genders) talking about guitars to distract us and give us something to do as we get old. We all know how it goes...

Hang in there.

3

So sorry you have to deal with this. Hope the meds sink it!

4

One of my best guitar mates had it (used to post here on the regular) - rough, and like yourself, a long time to diagnose properly. However, he did respond to treatment and eventually came right. Hope you do as well.

5

Good luck to you, man! That sucks big time. I once (I was a teenager) visited 8 doctors to have the right diagnosis on a skin condition I had. Not fun.

6

Sorry to read that. My dad has it. He has had it for at least 20 years. His will flare up from time to time and really mess him up. He's been suffering from muscle pains, TMJ, arthritis and countless other lousy things due to the disease. He has found relief with steroids, although that's not a great long term option. Cutting down on carbs really helps.

7

Sorry to hear that. Chronic Lyme is a bear.

Good luck with the antibiotics.

8

Sorry to hear about this. I had a friend who had it and had to go through 2 doxycycline treatments. Nasty stuff.

Get better, and stay out of the sun while taking the doxy! I'm sure they already told you this, but this is a must for any tetra-based antibiotic.

9

Ruger, My story is very much the same. I may have had this for more than a decade. Basically, I shut down a few months ago and have just recently finished a round of doxy. I feel a lot better, but I'm still having a lot of issues, and here it gets frustrating.

Apparently, the jury is out as to whether another round of doxy will actually do anything. They say that some of us actually are cured with the first round, but the symptoms will hang on another six months. Testing at this point apparently tells you little (they said to test again in 6 months).

Anyway, I'm functioning again--in fact, I recommend just getting on with it (Although don't do an executive fight night in this state--that was not a good decision). What I find helps a lot are turmeric and cherry pills for the muscle and joint pain, as well as typical glucosamine supplements. My headache went away with the antibiotics, as did my vision and concentration issues (which were bad). I have had to take naps, which I can do, as I run my own biz, but one thing I do not rec is coffee. It really makes things worse. I think it triggers an entire onslaught of symptoms.

Also, don't go out in the sun on doxy. I did that and it did not go well.

Pls, let me know what happens after the round of doxy and what the doc says you should do. I'm curious for my own sake.

K

10

Ruger,

One thing--not to downplay this by saying 'just get on with it.' Really, this pretty much derailed my life this year. I could barely work. I managed to keep playing guitar at church, but I had a terrible time with volume (and that was only church volume) so after a few songs I had to sit down and recuperate, which consisted of me literally shaking all over for 20 minutes.

Until you've had it, you just don't understand. The crazy thing is that I know people (and I'm surprised by how many) that have had it much worse than I have. I'm talking month-long stays in the hospital on an IV with constant antibiotic drip.

When I say I 'got on with it'--I really did not have a choice. My biz has been up and down and nobody is going to keep my family fed but me. Plus, it may sound funny, but I've been dealing with lighter "attacks" for years and years. I just didn't know what they were. The docs though I had lupus (they told me that maybe 20 times), but I didn't, and obv, in Poland any time a foreigner has generalized symptoms, they want you to get an HIV test--I guess due to so many good looking women and so many foreigners that are woman crazy. But that gets old fast (and mega frustrating), and when you tell them you are happily married and have been for years, well, they don't believe that either.

Crazy.

I'm actually relieved to know what it is (although frustrated in that it's not just gone with antibiotics).

Anyway, hang in there.

K

11

Konrad-

You might want to check out a book: The Lyme Solution. It's written by a lyme specialist doctor, who had chronic lyme himself. In it he recommends several different alternative protocols- chinese medicine- and one of the protocols, the Zhang protocol, is the one I am going to start as soon as I'm finished with the 28-day course of oxy. I am optimistic. I highly recommend this book, it was just released so it's got the latest info on lyme, and is also based on his private practice where he has treated thousands of people for lyme, with very good results.

And yes, I totally understand the "get on with it" sentiment... I am actually more optimistic now that I have been diagnosed.... a bad diagnosis, but at least NOW I have a target to attack! Which is more than the "I don't know" I've been dealing with for... 15 years? A long time.

I'm not working with my regular doctor (except for the doxy)- the western medicine guidelines for lyme are a damn joke. They are getting ready to release new guidelines, and they basically say "uh, sorry, we can't help you. Try some doxy. Good luck." Instead, I am working with a functional nutritionist (who is referring to a lyme specialist). As well as research on my own- she knows the doctor who wrote The Lyme Solution, and that's how I find out about it. I really do recommend it.... it's worth the $30 or less you'll spend... lots of information in there.

Proteus-

Man, that was perfectly stated!

12

Ruger,

Cool. I'll defo have a look at that.

Actually, until I was diagnosed I had no idea it was this prevalent.

K

13

Ruger,

Cool. I'll defo have a look at that.

Actually, until I was diagnosed I had no idea it was this prevalent.

K

– Konrad

The "normal" lyme tests that have been given for years are not very accurate... they have a high (at least 50%) "false negative" result.... I have no doubt the false negative is what has kept me from being diagnosed all these years. I took a newer and more accurate test, with one of the lyme specialized labs in the US, and not only did I come back positive, but HIGH positive.

When I went to my doc to get the doxy, I discovered they just, just this year, switched to the newer more accurate lab testing. I have read that while only 30,000 cases of lyme get officially diagnosed in the US every year, some speculate the number of actual infections could be near 300,000.... going undiagnosed, either because of the inaccurate testing, or many times doctors don't even CONSIDER testing for lyme (as you have experienced: "you have lupus...")

14

Really, docs should ask:

1) do you go camping or fishing often? 2) do you have dogs?

Instead of suggesting lupus or HIV testing anyway.

K

15

My brother has it. Delaware is in the lower range of the NE Lyme Disease belt. We had to check ourselves for ticks perpetually when living there during the season.

What I don't get is when Lyme Disease really started, or when ticks became the carrier.

Walking to school is the 60's I remember ticks, waiting on top of the taller blades of grass, swaying in the breeze.

Nobody ever had symptoms, you just removed the little bastards with a match.

16

Ruger- Sorry to hear, man. I hope the treatments work. I realize Lyme can have a wide range of severity. Two of our daughters had it, and even one of our dogs. Fortunately, they were caught early. My one daughter had the classic "bulls-eye" on her back and was complaining of headaches. My other daughter's conditions were not so obvious, and she was on a longer dose of antibiotics. We're in a pretty heavily wooded area with deer constantly passing through, so it's always a concern, especially now with grandchildren running around and exploring our yard. Again, best of luck with the treatments.

17

Fifteen years has to be extremely frustrating. Here’s hoping it works out this time. Good luck.

18

That's some bad stuff. Sorry to hear. I hope your healing regimen goes well. Didn't Darryll Hall have Lyme's? So I've heard.

19

My sincere sympathy’s, it sucks to no end . Proteus nailed the corporate mentality that runs rampant throughout the medical establishment, and the frustration of not being taken seriously. I was diagnosed as having reactive arthritis when I was 29. I took solace in believing that it was supposed to be more of a chronic pain issue rather than actual joint damaging. I just toughened up and took it, not realizing until this month that it may have been a misdiagnosis. I have mid to severe damage in my back and hands consistent with rheumatoid arthritis. I just tested negative on all three tests, so apparently I have Seronegative RA. It would have been nice to know that 37 years ago, I may have opted to work in a less physical demanding line of work. Now the damage is done. Had I been given the proper medicine it probably would not have done as much damage. The good is that now that I’m on it my hands are doing much better, but the back issues are really life changers.Never trust that the doc’s are right. I wish you all the best in dealing with this, please keep us informed with your foray into alt treatment.

20

ruger9 -- Wow -- I can't imagine suffering the way you have for 15 years (and keeping your sanity). I wish you all the best for your treatment and long term recovery.

21

One of my wife's closest friends had mysterious symptoms that went on for several years. Joint pains, and a lot more. She spends a lot of time outdoors, tending a ridiculously over-sized veggie garden and 40+ fruit trees. And there are plenty of deer running through her yard each day.

Finally diagnosed with Lyme, she successfully completed the antibiotic treatment and feels "normal" again, for the first time in years.

I'll hope it works equally well for you, Ruger.


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