First discovered I had Lyme about 4years ago, treated at the time with 4 weeks of Doxy. Over the years it has waxed and waned, small symptoms here and there, nothing crazy.
Fast forward to two weeks ago and I woke up with crazy muscle soreness, fatigue, some numbness and tingling, muscle twitches (I have a persistent small twitch in my stomach/abdomen that is freaking me out). stiffness in most of my muscles and joints, pain my in my back and neck, etc.
Just curious if anyone has any advice? I had an appointment with my Neurologist yesterday just to schedule some Neuro exams (EMG/MRI Brain/neck) but I am not expecting them to really show anything significant. I have ordered some of the Buhner medications from Green Dragon.
If it helps, I came up positive for IGG bands p93, p66, p58, p45, p41, p39, p30, p23, p18 and then IGM bands p41, p39, and p23.
Posts: 31 | From NY | Registered: Mar 2016
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posted
Hi Joe - your test results are off-the-charts Lyme disease!! And so are your symptoms. You definitely are in need of treatment! We are all different in how we respond so it's a matter of seeing what you respond to.
I don't think the neurologist is going to be of much help to you. I suggest you post in Seeking a Doctor for referrals to Lyme-treating doctors in your area. A Lyme doctor will also bloodtest you for your body chemistry.
In the meantime, there are some basic remedies that many of us have found helpful.
I take a 00-size capsule of turmeric in the am and pm and that stops pain in my muscles and joints. Very simple - it's a cooking spice and very anti-inflammational.
Taking magnesium can relax muscles and stop twitches. The bacteria uses up our magnesium so we need to take it. There are a couple different kinds. I think we all experiment to see which one works best for us.
Don't know whether you need a good chiropractor. I see one who relieves neck and back pain, and I do a lot of other things as well, like Lyme treatment, PT, stretching, etc.
Re fatigue, I lived on flower pollen for a long time before I found out I had Lyme.
The numbness and tingling means you need to treat the Lyme. There's antibiotics, there's herbs, etc.
You will get to feel better in time when you find treatment that works for you.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I very much appreciate the response, it's funny you say that cause I had an infectious disease doctor tell me my lyme labs are the most positive/off the charts lyme results he's ever seen (not that it's a contest). He had some scale of "positive" results mostly between 1-2 or something and I was way off the chart at like 4 or something. Funny that the same doctor was insistent I would be fine after 4 weeks of Doxy.....
I don't have high hopes for the Neurologist either and am merely running those tests as a formality, the Neurologist himself said he doesnt expect to find anything and believes this stems from my Lyme not being adequately treated and basically becoming a permanent immune response.
I am doing some research on Lyme doctors in the area, I live on Long Island. In the meantime I am trying some of the Buhner stuff from Green Dragon, and am going to also start the Magnesium & Tumeric you mentioned, I am also going to give a B-vitamin a try and will look into the flower pollen.
I have high hopes as I'm still in decent health despite the symptoms, I am an avid runner and currently this has basically robbed me of the strength or ability to do that. Oddly enough I often wonder if running over the years is how I got the tick that is causing me these issues. If I could just get the muscle twitches and soreness to calm down a bit it would be great, those are the things that freak me out of most.
Posts: 31 | From NY | Registered: Mar 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hey Joe
Super quick fix for tremors, twitches, muscle soreness and PAIN. Go to any store and buy Epsom salts for baths. You will need 2lbs or 2 cups per bath. Dissolve and hop in for 20 minutes. You will feel instant relief and a calm will come over your body.
I go to the Dollar Store and buy 1lb bags for 1.00$. I wish I owned stock in Epsom salt at this point. Try it, you'll like it.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Thank you I will definitely give that a try as soon as I can, I would give anything to get them to stop for a little while right now.
Even though I don't think anything will come of them I am admittedly a little nervous to get these Neurological tests done. There is always that creeping thought in the back of your mind that it could turn out to be even worse than I am already thinking, not that Lyme isn't enough
Posts: 31 | From NY | Registered: Mar 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I forgot to tell you why Epsom salt baths work, where's my brain?
Epsom salt contains magnesium sulfate. Magnesium is a healing agent and pain reliever.
Lyme utilizes our magnesium so Lyme patients are alway told to supplement with magnesium capsules. The problem with magnesium supplements is that they need to be taken 2 hours before and after any other meds because they render other meds less effective. This can be very challenging trying to squeeze in a Lyme / Co-infection protocol.
The beauty in Epsom salt baths is they are absorbed through the skin and cause no disruption to other meds. Instant magnesium anytime day or night.
P.S. Your reactive bands SCREAM Lyme, as do your clinical symptoms. Get yourself a specialist in Tick Borne Infections. (LLMD) It will be the best 3 hour physical you've ever had!
Posts: 2977 | From Florida | Registered: Nov 2016
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I am not a doctor, but I think you were under-treated. Four weeks of abx are not enough (see link for treatment guidelines given below).
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Read the books written by the top LLMD, Dr. H titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.
Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy them used online.
posted
I greatly appreciate all the information and the PM, I am going to look through all of it starting tomorrow morning when I have the strength. The support and information on this forum is phenomenal. Just to have people to talk to that don't treat you like you're crazy or some kind of mental case is so refreshing.
The magnesium thing is something I am seeing a lot of, I am going to try those bath salts later this week.
My main aim now is to get into see a good LLMD as soon as possible, I know since they seem few and far between it might be a little while but at least there's hope
Posts: 31 | From NY | Registered: Mar 2016
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posted
Has anyone found any exercise they do that doesn't make their symptoms flare like crazy?
I know exercise is kind of a no-no as per protocols but I was such an active person that it is hard for me to drop it cold turkey.
But literally everything I do right now makes my symptoms so much worse for the 24/48 hours after I exercise. My muscle twitches/spasms go absolutely insane.
Posts: 31 | From NY | Registered: Mar 2016
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This was posted by a seasoned Lymenet poster who got well:
"Begin doing Dr. B's exercise program. It is designed to boost your immune system and thus get it back to normal. Once your immune system is again normal, you should not relapse anymore. It worked for me.
Many people overlook this requirement from Dr. Burrascano, but my Lyme doc told me at my first appointment that it was ESSENTIAL that I do this exercise if I was ever to get rid of Lyme.
It has now been over 12 years since I completed my treatment and I am still symptom free, enjoying my life. I have the same life I had before Lyme disease.
And, in that 12 years, I have gone through unbelievable stress, the need to take steroids many times, (oral and epidural injections), and been bitten by another tick and got a bulls eye. (That required only 30 days of treatment by my Lyme doc.)
Still, with all of that, I have never relapsed. That is why I say that I am cured.
The necessary exercise is one continuous hour of weightlifting every OTHER day. It must be a full body workout each time. That means you do arms, chest, abs, back, butt and legs each time.
You use light weights and do many repetitions. Read about it in Dr. Burrascano's Guidelines starting at about page 30 or 31.
I suffered from extreme muscle weakness when I had Lyme, so this was very difficult for me to do. Nevertheless, I persisted until I was able to do the full one hour.
If you are weak, just do the arm weights for as long as you can (5 minutes? 10 minutes?) then switch to legs. Switch to different exercises until you have done all body parts. Then, if you still have time, do it all over again.
You can use the bench press for chest, leg lifts on leg machines, crunches for abs, also leg machines that do buttocks. Back exercises don't require any machines generally. Find some on the Internet and add them to your routine.
If you can't get to a gym, rig up what you can at home, even if it is just lifting soup cans, then heavier cans, set up a pulley for additional arm exercises, put ankle weights on your legs, etc.
Another poster also credits the exercise for the fact that she has never relapsed. "
"LYME DISEASE REHABILITATION" found in Dr. B's Guidelines:
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
Although the scientific basis for the benefits of exercises is not known, there are several reasonable theories....(p. 31)
posted
any of you guys ever get like a visible pulse? for the past week or so I can see my pulse in my neck, arms, and stomach. like its pounding so much it's visible
my heartbeat is normal/not elevated it is just super weird and makes it seem like/feel like my heart is pounding when it isn't
Posts: 31 | From NY | Registered: Mar 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
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posted
I havnt had the visible pulse thingy but I used to have other weird symptoms. If I shook my legs, like I'm trying to get out of slippers, I could feel rubber bands (tendons!) bouncing around inside my ankles. I would hear people calling my name when I was alone. I would lose 1 hour of time in what I thought was 5 minutes.
NOTHING SURPRISES ME WITH LYME! But all the craziness went away with treatment.
As for exercise, I would go to the gym and start a rotation of all weight resistance machines. I started slow, 5 minutes per machine, stay 1 hour per session, 2x per week. Most machines you sit down at and have adjustable weights. Gyms are now closed so I am swimming. I find it helps but does not compare to the weight machines. I had severe muscle loss due to being bed-ridden and within a month of weight training, I made remarkable gains. Especially increased energy levels.
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I think your muscle twitching is from lack of magnesium. There are a couple different kinds. I take Natural Calm. Many think highly of ReMax. Etc. The deal for all of us is we experiment to see which remedy works for us, since we're all unique.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
The pulse thing is so weird, it literally makes it look/seem like my whole body is pulsating, freaks me out. When I lay down you can see my stomach moving as my heart beats
I appreciate exercise advice and I am going to look into the weight machines. I was always a cardio guy but I know that is a big no no.
I have started to take magnesium, be on it for about 5/6 days now, not seen any improvements yet but going to give it time and like you said, experiment with different types.
Posts: 31 | From NY | Registered: Mar 2016
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posted
Predictably got back all my neurological tests (MRI neck/brain, EMG, EEG, etc.) and they were all "totally normal". I was a bit worried about the EMG given my muscle twitches, etc but nothing showed up.
In some ways it puts my mind to rest a bit as thoughts begin to creep into my head that Lyme maybe had caused me to develop other neurological related conditions/diseases.
Just thought I would share as I know this is a common thing from reading other threads. The neurologist encouraged me to find a lyme literate doctor (which I am in the process of getting an appointment) as he says all my neurological issues clearly stem from there
Posts: 31 | From NY | Registered: Mar 2016
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posted
So I have noticed when I scratch my skin, I get these kind of little red dots underneath that look like petechiae, anyone familiar with this?
I believe I did have it 3/4 years ago when I initially noticed I was sick. I had a CBC just 2 weeks ago so my blood count is fine on paper, I know they can be linked with other diseases too.
They tend to fade within a few days or so, some kind of turn into tiny bruises.
Posts: 31 | From NY | Registered: Mar 2016
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posted
Ended up at the ER last night, I have constant pulsating in my stomach (I always assume it is just that I can see my pulse there, cause I can always see it in my neck and arms) but it got a bit painful and was worried about an abdominal aneurism.
They did an ultrasound and thankfully found my arteries were normal, ECG normal as well, so just another Lyme symptom to add to the table I guess.
Posts: 31 | From NY | Registered: Mar 2016
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quote:Originally posted by joemateo222: The neurologist encouraged me to find a lyme literate doctor (which I am in the process of getting an appointment) as he says all my neurological issues clearly stem from there
You have a very smart neurologist!!!
Glad your test came back OK!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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quote:Originally posted by joemateo222: The neurologist encouraged me to find a lyme literate doctor (which I am in the process of getting an appointment) as he says all my neurological issues clearly stem from there
You have a very smart neurologist!!!
Glad your test came back OK!!
He is definitely a good doctor, always does the tests I want with the caveat that he doesnt expect to find anything and that he believes my issues stem from lingering Lyme symptoms, which he doesnt believe he is the best person to treat that. Judging from other users experience with Neuro's, he seems to be the exception to the rule
Posts: 31 | From NY | Registered: Mar 2016
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I often get the tiny red dots too after scratching. Sometimes leaves streaks on my skin that look like I dragged a dry red paint brush across it. There for days afterwards.
And the pounding pulse. Have almost headed to the ER many times because of it. Especially at night. Sometimes it’s visible but mostly just feel it. Feels like extremely high blood pressure. But it isn’t.
I think the pounding is my body trying to fight off the disease. Also feels like a buzzing current of some kind running through my whole body. In my head too. And It definitely all gets worse after trying things that cause a herx.
You said you ordered some of the Buhner herbs. Did you notice anything from those? Glad to hear your neuro tests were okay.
Posts: 15 | From Southwest | Registered: Aug 2020
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I often get the tiny red dots too after scratching. Sometimes leaves streaks on my skin that look like I dragged a dry red paint brush across it. There for days afterwards.
And the pounding pulse. Have almost headed to the ER many times because of it. Especially at night. Sometimes it’s visible but mostly just feel it. Feels like extremely high blood pressure. But it isn’t.
I think the pounding is my body trying to fight off the disease. Also feels like a buzzing current of some kind running through my whole body. In my head too. And It definitely all gets worse after trying things that cause a herx.
You said you ordered some of the Buhner herbs. Did you notice anything from those? Glad to hear your neuro tests were okay.
Can be reassuring in a way to hear that other people experience the same thing, even though it makes me feel bad for you.
I always assume the tiny red dots were a sign of infection or just platelets/red blood cells breaking down easy, my blood counts are always normal whenever theyre tested though
The pulse and buzzing/current like you mention is always with me, like ive mentioned I can see my pulse in my neck/stomach/arms, like you said I think its my body trying to fight it or it growing.
I did order the herbs, im not sure what to think as some days are okay and some are really bad. I am pursing a LLMD with the hopes of getting on some IV antibiotics eventually. what have you tried? I have heard of people who have had success with the herbs.
My neurologist is probably tired of me at this point, I've had probably 5 EMG's/brain MRI's/etc over the last 4/5 years, each one totally normal. even though I assume they'll stay that way I need them for peace of mind
Posts: 31 | From NY | Registered: Mar 2016
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posted
It's very common for us to test normal, since the tests are not testing for Lyme disease.
The weirdest normal test for me was when my eyes couldn't even look at light, the neuro-opthalmologist had to anesthetize my eyes to do the eye testing, and I tested normal! With floaters, eye muscle pain, light sensitivity and blurred vision. Definitely not normal eye experience!
Then my chiropractor the next day suggested I try drinking mangosteen juice. I did, and all my eye symptoms of over 2 decades cleared up overnite! The juice is anti-inflammatory.
I give you this story as an example of being a Lyme patient with all the symptoms we have and still testing normal! it's like a bad sit-com!
Posts: 13116 | From San Francisco | Registered: May 2006
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I remember a while back using Samento, Cumanda and Banderol, and those helped calmed things down. But had to start real slow because of herxing. Artemisinin also helped, and Im needing to go on that again.
Later however, I had to go on ABX again for quite a while after being rebitten. I developed a drug resistant UTI from that. Couldn’t get rid of it for a year. After it cleared finally, I stopped all ABX. But when I tried to resume the use of any alternative herbal ABX, like the Samento, the UTI would start to come back. Weird.
So I’m just mainly taking Bovine Colostrum nightly now. And starting Artemisinin again. Also I use CoQ10 200mgs and Elderberry syrup. Thyroid medication.
I know the Colostrum is most powerful because when I miss a night, I start to feel really horrible again within 24 hours. So it’s not killing the bugs, but it really boosts my immune system to fight most of the disease back.
Hope you can find something that works for you!
Posts: 15 | From Southwest | Registered: Aug 2020
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posted
Been getting a lot of eye symptoms lately, particularly in my left eye. eye watering a bit, eyelid twitching a lot, etc.
I know eyelid twitching is fairly common in general and pretty common to lyme, just curious if anyone did anything particular for it or it just falls into the twitching in general (I twitch all over my body fairly frequently throughout the day)
Posts: 31 | From NY | Registered: Mar 2016
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posted
one for question for you guys that might be more familiar with testing than me. when I was originally tests 4/5 or so years ago I came up positive for IGG bands p93, p66, p58, p45, p41, p39, p30, p23, p18 and then IGM bands p41, p39, and p23
I was tested again recently, not through Igenex or anything great it was IGG/IGM Iummoblot with reflex via Quest (it was all I could get insurance to cover right now, I was just curious to see cause my tests 4 years ago were so positive). My IGG was still positive for 18/39/41/58/93 but my IGM's were now non-reactive on that test. above that it also said my AB screen reflex was 3.15 was was very high
Again, I am not that familiar with testing, just curious what you guys make of that as a comparison to when I was originally tested 4 years ago. just trying to get as much knowledge as I can
Posts: 31 | From NY | Registered: Mar 2016
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by joemateo222:
But literally everything I do right now makes my symptoms so much worse for the 24/48 hours after I exercise. My muscle twitches/spasms go absolutely insane.
I have started to take magnesium, be on it for about 5/6 days now, not seen any improvements yet but going to give it time and like you said, experiment with different types.
Joe, how are things going with you? What kind of magnesium are you taking now? Has it helped the muscle twitches/spasms?
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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But literally everything I do right now makes my symptoms so much worse for the 24/48 hours after I exercise. My muscle twitches/spasms go absolutely insane.
I have started to take magnesium, be on it for about 5/6 days now, not seen any improvements yet but going to give it time and like you said, experiment with different types.
Joe, how are things going with you? What kind of magnesium are you taking now? Has it helped the muscle twitches/spasms?
Hey Carol, the magnesium didn't really help with the twitching/spasms. I have managed to find a doctor who takes my insurance that was willing to start me on IV antibiotics (ceftriaxone) since I still test CDC positive for lyme (I have 2 of 3 IGM bands and 8 of 9 IGG even now). I also have IGG bands in my spinal fluid.
I literally just started the IV antibiotics yesterday so we'll see how it goes, hoping for some relief as my neuro symptoms (twitching/tremors/vibrations/tingling) are pretty bad.
Posts: 31 | From NY | Registered: Mar 2016
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Carol in PA
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posted
Joe, you say the magnesium didn't really help with the twitching and spasms. But which kind of mag were you taking, and what dosage? How long did you take it for before you stopped?
Muscle twitching and spasms are symptoms of low magnesium and there are many others too. Headaches, migraines, light sensitivity, hearing sensitivity, depression, anxiety, insomnia, teeth grinding, stiff neck, etc.
It's difficult for the body to absorb magnesium. Some kinds, like magnesium oxide, are more difficult to absorb. (The ones ending in "-ate" are better.) Most people who want to try it go to the store and pick out the cheapest kind, which is mag oxide. They take a dose that is too low, and they wonder why it doesn't work.
Carol in PA
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Member # 5338
posted
One poster suggested soaking in an Epsom Salt bath. This is mag sulfate. If you want to try this, there are instructions online. You'll absorb magnesium through the skin.
You can also buy magnesium lotion and magnesium oil, which are just water based solutions of mag sulfate. You apply it to your arms or legs and let it dry. It's thin, like water.
I tried this in the summertime, and didn't particularly like it. Our weather here is pretty humid, and the mag solution feels sticky when it dries. Your skin feels just like when you swim in the ocean. I couldn't wait to wash it off. I also tried soaking my feet in the magnesium oil, and that didn't work out for me either.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Carol in PA
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Member # 5338
posted
Since you just started IV antibiotics, your liver will be detoxifying remnants of the dead Lyme bacteria.
The liver needs more magnesium to do this job, and if it doesn't have it on hand then you'll get more symptoms and feel like crap. Look up Jarisch Herxheimer reaction.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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quote:Originally posted by Carol in PA: Joe, you say the magnesium didn't really help with the twitching and spasms. But which kind of mag were you taking, and what dosage? How long did you take it for before you stopped?
Muscle twitching and spasms are symptoms of low magnesium and there are many others too. Headaches, migraines, light sensitivity, hearing sensitivity, depression, anxiety, insomnia, teeth grinding, stiff neck, etc.
It's difficult for the body to absorb magnesium. Some kinds, like magnesium oxide, are more difficult to absorb. (The ones ending in "-ate" are better.) Most people who want to try it go to the store and pick out the cheapest kind, which is mag oxide. They take a dose that is too low, and they wonder why it doesn't work.
I have tried a few different types including the one you linked too and I am still taking it, just because it hasn't helped yet doesn't mean I am giving up on it for sure. Like you said, since I just started IV I am trying to give my body everything I can to help it cope with the die off and symptoms from that.
I am curious to see how the Ceftriaxone does in the long run, I am also combining it with some of Buhner's herbs amongst other supplements. Trying to stay optimistic and just do all that I can
[ 01-02-2021, 11:06 AM: Message edited by: joemateo222 ]
Posts: 31 | From NY | Registered: Mar 2016
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Carol in PA
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posted
Good for you! Most newbies don't know to try different kinds.
This one uses magnesium carbonate, which is supposed to be one of the best mags. I add a little sugar to make it taste better.
Do you know about fish oil? It improves liver function and reduces inflammation. I took it for several years, and it reduced joint pain and headache for me.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Joe, I had the same symptoms as you. I went for many years with waxing and waning symptoms, but always knew something was wrong. There has always been fatigue that just doesn't let up.
I'm so glad I happened to go to a LLMD. He saved my life, because I was getting worse rapidly at that time.
I think you are smart to try more than one thing. I've been throwing everything I can at it, and hope to finally lick this illness. I've definitely improved, but know I have to keep at it.
Some things that others swear by were not good for me. We are all so different that we each have to find what works for us. A good LLMD is a great help.
I hope you have success in your treatment.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
All the best with your IV treatment - have patience - this is a marathon, not a sprint!
For that sx list, I've done: Magnesium, turmeric and stretching for muscle pain and spasms Turmeric for joint pain Chiropractic for back and neck pain Malic acid and mg, and flower pollen for fatigue.
You asked about helpful exercise. For me, it's gentle stretching. This gets helps get the waste products out and the oxygen in! Pools are closed now, but I like to do stretching in the water too.
We're all different so all we can do is see if something helps.
I've heard a lot of runners say they got Lymed while running outdoors.
Posts: 13116 | From San Francisco | Registered: May 2006
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