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» LymeNet Flash » Questions and Discussion » Medical Questions » Reoccurring Symptoms/Advice

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Author Topic: Reoccurring Symptoms/Advice
joemateo222
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Hello all,

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: 20 | From NY | Registered: Mar 2016  |  IP: Logged | Report this post to a Moderator
Robin123
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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.

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joemateo222
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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.

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Bartenderbonnie
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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.

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joemateo222
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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

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Bartenderbonnie
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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!

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hopingandpraying
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Hi Joe!

Sent you a pm with LLMD info for NYC & CT.

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.

Here is a link for them:

http://www.lymenet.org/BurrGuide200810.pdf

Unfortunately, LLMDs are far and few between. You need to go where they are.

Also, most LLMDs do not take insurance due to the politics surrounding this disease. Read poster TF's explanation about this:

"Why Lyme Doctors Don't Take Insurance"
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Check the NY Lyme Support Groups at:

http://whatislyme.com/lyme-in-new-york/
www.empirestatelymediseaseassociation.org

http://www.lymenet.org/SupportGroups/UnitedStates/NewYork/

Link for NYC Lyme Support Group:

http://www.nyclymesupport.org/

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.

View "Under Our Skin"
https://m.youtube.com/watch?v=2JgR_Jfbhv8&noapp=1&client=mv-google

and "Under Our Skin2: Emergence"
https://drive.google.com/open?id=1iAzRksyHfSNWBGsHcugYl9a8WQ9TnDCW

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joemateo222
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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

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Lymetoo
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LLMD needed . . Don't expect the neuro to do squat for you.

Welcome to Lymenet!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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joemateo222
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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.

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hopingandpraying
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Here are earlier posts about exercising on Lymenet:

https://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=135483;p=0#000002

https://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/135980?

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)

http://www.lymenet.org/BurrGuide200810.pdf

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joemateo222
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Much appreciated. I am going to give that a try and see how I do.
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joemateo222
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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

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Bartenderbonnie
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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.

Here is a good article about the Twight Zone symptoms of Lyme. Nobody 'gets it' until they 'get it'.
https://willtherebecakedotorg.wordpress.com/2015/04/06/lyme-be-weird-the-twilight-zone-of-neurological-lyme/

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.

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Robin123
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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.
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joemateo222
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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.

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joemateo222
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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

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