posted
I used to have muscle facilations, isolated quivering with twitching. Now I seem to have full body shaking, am I getting Parkinson's? It isn't noticeable but I feel it inside.
I took magnesium and it helped at first but now I have to take more and more to get the shaking to calm down.
I've already been dxd with ALS and Lyme, do I have to add Parkinson's to the list?
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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posted
I would let your Lyme dr. know these symptoms. Hope he/she is one that knows the connection with ALS/Parkinsons with what all lyme and the co infections can do to you.
I think quite a few in here have had this symptom, but hope they will add their thoughts.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I hope that you have the best LLMD possible, and one who is experienced with ALS (even though it is probably from the Lyme, etc.). If you don't, you should look into getting to the best possible one.
Let your LLMD know about this symptom quickly.
I hope that your LLMD is addressing all co-infections, multiple abx for the Lyme, etc. (as tolerated), heavy metal toxicity, detox,
and nutrition. If he/she can't do all that, then you need to see someone else to fill in the gaps. It's all essential with what you are dealing with.
Posts: 3771 | From around | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You may need more and more magnesium. You may need IV magnesium or shots to get it up to levels. In the meantime, take it to bowel tolerance and back down. Keep it high if you need to.
Taurine is also good to stop shaking. Calcium, too. Be sure your blood sugar is not too low - or too high. Are you eating enough food?
posted
Gross body tremors are one of my most frustrating and scary symptoms, and for me they are often quite severe. For me, it's noticeable from across the room, but when they aren't I feel them inside as you mentioned. Otherwise, I recently watched a clip on youtube of Michael J. Fox and found myself realizing I look a lot like him in my movements and intensity.
For me this often gets worse when I am herxing. Is that a possibility for you? Perhaps increase your detoxing. Also Keebler's comments are always very good.
Also, for me it gets a lot worse when I am stressed. The last week has been particularly intense with these tremors and a couple days ago I started spending most of the day in bed, dark room most of the time, away from the computer, just resting. I'm feeling a bit better from that -- not gone, but better.
For me it feels as though my nerves are just fried and anything stressful puts me over the edge, so I cut those things out. Then just deeply resting is healing on that level too.
I understand how scary this can feel. From what I've read, it's something that can subside through treatment. Keep faith, talk to your doctor, and do as much as you can to rest your nerves. For me the fear of what this means and the embarrassment of how I look adds to the stress -- the more I can let go of those fears and just let myself be where I am right now the better.
posted
I get this "internal shaking, vibrating, buzzing feeling" too. Especially when I am herxing. It is a lyme symptom. Do you think you are herxing?
Posts: 747 | From Utah | Registered: Apr 2010
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posted
keebler is correct magnesium has helped me with the shakes or tremor I take 1000 mg per day and it keeps them under control !
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I believe amantadine helps with this. Research it. This is my pathetic memory trying to recall but a LLND told me it is given to parkinsons patients and works well for those of us with muscle spasms.
I had a lot of twitching, spasms and cramps before treating bartonella. It can be caused by both bart and lyme. You should also take B12. Mine was much worse when I was herxing. In fact I never had it until I started ABX.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Looked it up myself as I am using it.
Generic Name: Amantadine (a-MAN-ta-deen) Brand Name: Generic only. No brands available. Amantadine is used for: Preventing and treating certain types of flu. It is used to treat Parkinson disease and uncontrolled muscle movements caused by some medicines. It may also be used for other conditions as determined...
Under side effects it can CAUSE muscle spasms, as well as insomnia and strange dreams (I was up at 2AM). It is supposed to help certain abx be more effective.
And it says it one place not to take it with B12. Good thing I looked this up. . .
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
TooYoung... try to listen to this sometime this week. It will be on the link I posted for the ILADS. This is the dr. that was diag. with ALS.
Neuro II by David Martz, MD 8:40 AM - 9:40 AM [11:40 AM - 12:40 PM eastern] This session will discuss specific syndromes like ALS, MS, Parkinsons Disease, Dementia, Peripheral Neuropathy, and potential treatment regimens
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Here's that link that hadlyme posted at another site for ILADS Streaming Video:
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
The internal vibrations can be from parasites and can be better in very short time. Give it a try,parasite treatment is very easy. Pm me if you need details. My vibrations are almost gone. If you are so sick also start the parasite treatment slow, you cannot handle a massive herx. I am on hydroxy B 12 which gives me the energy to handle everything.
Posts: 1834 | From US | Registered: Oct 2008
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posted
Agree w/Kimmie. It's a Lyme or co-infection symptom. I went through a period where it was very severe and worried about the same thing you're concerned about, but after lots of treatment, it's mostly gone. I still get a little shaky when I'm herxing, but it's nothing compared to what it was. Still, it doesn't hurt to get enough magnesium.
Posts: 975 | From California | Registered: Apr 2007
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posted
i have this feeling as well -- i feel very unsteady and shaky, but i don't appear that way outwardly. i finally described it to my doctor as sort of feeling like i am incredibly hungry and feverish (like i haven't eaten in at least a day), but i am not hungry and i do not have a headache. shaky, anxious (jumping out of my skin), agitated, slightly lightheaded, and a little confused/slow. it gradually becoming less frequent and less severe as i continue on antibiotics. it is one of the most unpleasant symptoms for sure. the doctor said it is lyme-related (i had brain scans that came back normal). is this what you experience?
Posts: 43 | From new jersey | Registered: Jul 2010
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posted
Since my computer is not cooperating and I can't watch the ILADS conference I will chime in here.
As many of you know hubby has been sick for about 10 years and in treatment for about 7 years (off and on due to finances etc). His primary symptoms have always been neuro and G.I. What started as Parkinsonian tremors has progressed to include myoclonus, dystonia and seizure-like episodes. Nausea and dry heaves with some vomiting and gastritis from time to time were the main G.I. symptoms.
Hubby's first antibiotic was IV Rocephin -- it took us 3 months to do the normal 2 month protocol of 60 grams -- had to start with 250 mg daily and ramp up. Symptoms only improved maybe 30% but progress started going away within a week of stopping the Rocephin. Hubby was off antibiotics for 4 or 5 months before seeing the next LLMD who diagnosed him clinically with Bartonella and Babesia.
The last 6 years have been spent primarily trying to treat bart and babs. Hubby has seen several LLMD's and unfortunately the majority of them downplayed the significance of the coinfections.
Hubby's most recent hospitalization was in July of 2010. At that time he was put back on IV Rocephin. The first dose stopped his tremors and pretty much all movement disorder symptoms. He is consistently sleeping thru the nights for the first time in 10 years without having multiple episodes of waking up with tremors and dry heaves.
He tried IV Rocephin at 1 gram daily back in 2007 during another hospitalization and had no improvement in symptoms at that time. He did have some minor improvements in symptoms from a 6 week course of IV Primaxin in 2007 but as with the first trial of Rocephin the improvements started going away within a week of stopping the IV's.
In my opinion a couple of factors need to be stressed here. One is that the same antibiotic can produce different reactions in the same person at different points in time.
Hubby had no improvement from his first 3 months of oral Levaquin in 2003, but in 2007 it was a miracle drug. But it took much more treatment with additional meds to knock down the bart.
The 2nd point is the dose of meds. Bacteriostatic versus bacteriocidal is a very important point. Personally I think it is a good idea to start meds at low doses in most cases but the meds needed to be ramped up to therapeutic doses as quickly as tolerated.
Also -- there has been a tremendous amount of research done in the last 10 yuears. 10 years ago hypercoagulation, biofilms and cyst busters for instance were not even on the radar.
Personally I think systemic enzymes (such as Wobenzyme or Vitalzym) and things like lumbrokinase need to be a part of everyone's treatment protocol. The antibiotics or herbs need to be able to get to the bacteria to do any good. These are things you can do without a prescription, but if the right antibiotics are not in place at the same time then you can make yourself 10 times sicker in my opinion.
For example -- my personal opinion as to why hubby crashed in July was the addition of tindamax at the same time he discontinued Mino. If the tindamax broke open cysts without killing whatever was released then that would explain hubby's horrendous neuro symptoms. He continued on rifampin and factive and low dose oral zithromax but none of those are really known as great lyme drugs.
Personally I think everyone with long term tickborne symtoms also needs to have a trial of meds for babesia and bartonella. And I think in hubby's case that the reason the Rocephin is so much more effective this time is because he has treated both babs and bart aggressively this time.
This is not medical advice, just my opinion basd on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Thank you for all the posts, I guess I'm not alone.
My llmd isn't using anything but ceftriaxone. He is afraid I can't tolerate much else since I'm allergic to it and had to slowly desensitize in order to work up to the 2 g a day. I've mentioned the shaking but he doesn't use herbs or detox. He did mention magnesium so I take that and B12, calcuim, ledum and milk thistle. Also, I'm on Uridisol to prevent gall stones.
The shaking is worse when I'm out in public or nervous.
-------------------- Dxd ALS 3/2010 Dxd cllinical Lyme 4/2010 Positive for Protomyxzoa but absolutely nothing else in Igenex Posts: 417 | From central ct | Registered: Apr 2010
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posted
I also have had the internal shaking, buzzing. Right now it is concentrated in my head. It feels like one of those vibrating massagers is pressed up against the side.
Posts: 152 | From West Palm Bech, FL | Registered: May 2008
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posted
I get the internal tremors too. Sometimes I think I'm getting much better then things get much worse. like a yo-yo I'm up then down.
DO you also have involuntary leg movements at night? I think they call it restless leg syndrome. it can be quite a problem . that's why i'm up at 4:30 in the morning -- in addition to the stabbing lyme pains.
Posts: 107 | From new jersey | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you guys getting up to 1,000 mg of magnesium a day? Are you also getting your vitamin D3? Magnesium cannot work without vitamin D3 - or without B6.
Thanks to Carol in PA for finding this: -----------------------------
. . . Magnesium is a critical co-factor in more than 300 enzymatic reactions in the human body. . . .
. . . A therapeutic dosage could easily run between 400 mg and 1000 mg daily of elemental magnesium in divided doses. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Strongly agree with Karenl. Internal vibrations are most likely from internal parasites. Mine are almost completely gone since treating with antiparasitics.
Other supplements can be important, but getting rid of the parasites can play a MAJOR factor in getting well. Dr. K. treats all of his patients for parasites and worms before he goes after the other infections. Also check out
You could have the Filarial Worm co-infection, often overlooked in patients with Lyme.
This is what came pouring out of me after I started treating with antiparasitic herbs and salt/c. PLEASE don't ignore this,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
2young2die,
I understand you are not interested in parasite treatment. Then just kill the eggs - this will not bother you at all and is better than nothing and in some time the parasites will be gone.Ok it takes longer.
I treat with clove, I put it in 4 oz. organic cranberry every evening.I also use a spray from purslane. Pm me for details about vibrations. Believe me you need to address this symptom, it is very serious. You can feel better in two weeks.
Posts: 1834 | From US | Registered: Oct 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Gael, nice to hear from you and I am so thankful for all your information you gave us. My vibrations are also so much better and I have already a prescription for mebendazole but will not take the fast route for now.
Posts: 1834 | From US | Registered: Oct 2008
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posted
glm1111 you mention the finarel worm. did the vitamin c and salt treatment make a difference or did u have to take other antiparasitics? thanks for your help! joshzz
Posts: 107 | From new jersey | Registered: Dec 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
The shaking is worse when you are out in public or nervous. Welcome to MY club! It IS Lyme and co-infection related (and parasites I believe). I still get visible tremors when I'm nervous or seeing a doctor or anything like that. And I get it when I'm fatigued or herxing or stressed/anxiety.
I have the internal vibrations as well, it was one of my first symptoms. Your CNS is in overdrive. My LLMD gives me only mono-therapy because I was sick for so long and would not have tolerated high doses or more than one antibiotic.
I have a friend who I am SURE has Lyme disease. He grew up on an apple orchard in Ohio. He has been diagnosed with MS AND Parkinson's. Unfortunately he won't take Lyme seriously
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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