Topic: When/if you relapsed... what symptoms showed up first?
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
And how did you know it was a relapse?
I have been (mostly) off abx for a year. And have been at about 90% for the past few months.
In Dec, I even took a round of zith for a sinus infection with no discernible herx - just felt better and better.
Maybe I am just paranoid now, but for the last week or two... I've been very tired, joints a bit achy, muscles tight, headaches, a bit tingly in the extremities.
To be fair, there has been a bug going around our community - so it could be that. Maybe.
So - my question is when to worry?
When does one suspect a relapse?
If you've relapsed - when did you know it was a relapse? What symptoms clued you in?
Thanks for any thoughts on this, cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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joalo
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Member # 12752
posted
Buried on page two.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Sorry to hear you are feeling poorly. You know I don't have any answer, but I will send you a hug and wish you well.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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posted
I knew it was a Lyme relapse when I started getting lots of twitching along with skin burning and bad stuff necks. Its tough because I also have Addison's which I know you do as well and a lot of their symptoms overlap.
Even muscle stuff and tingling can be due to Addison's if your hormones are off.
Posts: 594 | From NJ/NY | Registered: Jun 2006
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posted
Let's hope it's Addison's and not Lyme. Maybe you hit your normal "Lyme cycle"? I'm sure all of us who had lYme still cycle to some extent.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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cactus
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Member # 7347
posted
Thanks so much for bumping this up, joalo. And for the hug, venus!
elley, I think learning more about the Addison's symptoms would help - I'm not clear on which symptoms overlap. So hearing that the muscle issues and tingling could be Addison's goes a long way. Thanks.
Tutu, I hope it's the Addy's too. Do you still have minor Lyme cycles, or has that passed for you?
Thanks again to all!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Well Cactus Addison's, like Lyme, is not an easy disease to figure out.
It took me a few months and a few endo docs to get on the right medication and the right dose. I had very bad muscle cramping, tingling (from poor blood pressure or inability to handle stress leading to an overdrive in fight or flight response), and weakness from the Addison's.
This of course can be Lyme as well, but as soon as i was on the right meds for a few weeks, there was quite a drastic change in how I felt and I started gaining lots of lost muscle mass back.
How long have you had the Addison's? Also-did you lose a lot of weight before the Addison's was diagnosed? One of the big problems with this disease is your metabolism gets very screwed up and it can really affect your stomach badly. I lost 15 pounds in two weeks just prior to getting diagnosed with AD. Basically my body ate its muscle.
Unfortunately, if you lose lots of muscle, when you get back on your feet again and try to go back to normal activities what muscle you have left is weak and it can result in spasms, cramping and twitching.
Addidon's also affects your electrolytes as I'm sure you know, which also affect your nervous system and your muscles.
The only thing that convinced me it was a Lyme relapse was burning skin and an electric feeling under my skin at all times. These were always two of my Lyme symptoms.
Posts: 594 | From NJ/NY | Registered: Jun 2006
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cactus
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posted
elley, thank you for all this.
I was diagnosed with Addison's last Feb - although before that my adrenal output was low and LLMD felt I had "adrenal fatigue."
Treating that (at the time) seemed to help so much, and I started turning a corner in my Lyme treatment.
Then I had a bout of pancreatitis. Horrible experience. As a result of that, I lost a lot (and I mean a lot!) of weight very quickly.
Once the pancreatitis was gone, my body just did not recover. That was almost worse than the pancreatitis, actually.
It was then that I was diagnosed with Addison's.
Once we started treating - wow, the difference was huge. I jumped from being Lyme/co symptomatic to almost zero Lyme and co symptoms.
I wonder how many of my Lyme and co symptoms were overlapping with the Addison's symptoms?
Anyway - for the most part, treating the Addison's has kept me functioning well.
We just rechecked all my levels, and according to the results it looks like we are right on target with dosages.
But you brought up electrolytes, and I'd forgotten about that aspect - could be that I need to work on that end of things a bit. Thank you for the reminder.
Do you find, with Addison's, that the symptoms come and go, or get worse at some times?
There has been a lot of stress here lately - not all bad stress, but stress all the same - so perhaps that's part of the picture too.
Thanks for all your help on this!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
stress (good or bad, the body knows no difference) will ALWAYS make Addison's symptoms worse, and yes mine come and go-even over the course of a few hours.
Thats the problem with a hormonal disease, it really flucuates and we don't get a nice smooth cortisol curve like a non-Addisons person, we take our meds two-three times a day so we will get more frequent peaks and valleys. This can lead to strange muscle symptoms, periods of weakness, periods of anxiety, etc. Even if all our levels check out via blood tests, this is till possible especially during stress.
It has been an adjustment and it still is, its taking me some time to learn whats been going on with my body and I am very good about watching other parts of my health.
i take the following things that really help me: Gotu Kola (helps with circulation and with coping with stress), Ester C 1,500 mg a day w/bioflavinoids, b complex w/cordyceps, fish oil, pantothenic acid, green superfood, Vit E, Vit D (often low in Addison's patients-had mine checked and sure enough it was low), calcium, probiotic). I know it seems like a lot, and I take two days off a week from the supplements with the exception of fish oil, b complex, and green superfood. I also eat lots of healthy proteins (grass fed beef, wild alaskan salmon, anchovies, sardines) and tons of veggies. I keep carbs limited to fresh berries and some whole grains. Higher protein diets seem to work better for Addison's since we have trouble keeping our blood sugar real stable.
Do you take any fludrocortisone? I am on hydrocortisone 20mg a day and .1 mg fludro a day. Fludro replaces aldosterone (the hormone your adrenals make to regulate sodium and pottasium) and if your not taking enough it can give you electrolyte imbalances.
Also, Even though we are only replacing the necessary cortisol that our bodies are failing to produce, there is still some evidence that taking hydrocortisone sucks up calcium which is why its a good idea to supplement that as well to prevent bone loss.
I have also found that a good protein powder is very helpful. One of the best things for me has been behavioral cognitive therapy-basically it has taught me to better deal with anxiety and stress. I still have a long way to go with a lot of this, but I've made real progress.
Posts: 594 | From NJ/NY | Registered: Jun 2006
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Thanks again, elley, esp for sharing your list of supplements - that is very helpful.
I do take some of the supps you mentioned, but not all - so I will do some experimenting.
Oh, and yes - I take fludricortisone - same dose as you. Same on the hydrocortisone, too.
This has been so helpful, and you've given me some hope that this is not a Lyme and co relapse.
Thanks again!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Just a mention, I take 12.5 mg DHEA (can be interconverted to many other steroid hormones as the body requires them) (I am male) and Licorice tea daily ( interferes with aldosterone breakdown) it is like herbal flourinef (added benefit-reduces muscle pain). Also good multivit with selenium for thyroid and extra amino acids (optimum nutrition-Gold Standard) double chocolate 1 scoop/daily with beverage of choice (having 22 gm whey protein and amino acids) includes building blocks for making thyroid hormone and other polypeptide hormones including pituitary hormones etc., and rebuilding damaged muscle and supporting healthier T-lymphocytes etc. I make sure to take some potassium source daily while taking licorice root tea. (alvita is brand of tea I use- others probably equally good.)
Beachinit
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Thanks, Beachinit - great info!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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