Topic: It's offical, my whole family has Lyme. And my Dr. used the A word.
IckyTicky
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Member # 21466
posted
I'm freaking out. I was dx CDC+ with Lyme over a year ago. I've had it probably all my life. My sister also has Lyme. My teenager came back CDC+ about 9 months ago. I took her to my dr when she started getting muscle twitches.
My husband came back + for lyme, but not CDC+.
My 6 yr old son just came back CDC+ for lyme as well, he has had problems since birth.
My 8 yr old girl has symptoms and has been clinically diagnosed...I'll get her results in a few weeks.
My youngest two have never had a tick bite and my husband of 10 years didn't have a single symptom until a year ago.
At our appt. yesterday my LLMD was not happy with my teenager's progress. Her muscle twitching has gotten worse and my doctor mentioned ALS to me (which of course stuck fear into my heart..being that muscle twitching was one of my worst symptoms, which I still have) He said something about muscle twitching possibly being caused by upper motor neuron involvement?
He tried to make me feel better and said he doesn't think she/we have ALS but I'm telling you I had to take a valium when we got home. I'm probably going to have to take another one here in a minute. Just thinking it gets me worked up, which I know wasn't my LLMD's intention. Someone please make me feel better! Anyone on here have all over body muscle twitches and has had them a LONG time and aren't any worse for wear? Was it caused by Lyme or Bart or what? I still have muscle twitching almost daily. It did go away for awhile, maybe for a month but came back. It's not as bad as it use to be but def. still there. My daughter has it I think to the same degree as I do. We both have hyper reflexes and clonus.
As we were leaving he mentioned that even though we have all so far tested neg. for Bart..he thinks we probably have it and it could also account for the muscle twitching. I'm sure he said other things but my mind was already racing and I couldn't really pay close attention.
I'm distraught about knowing my whole family has chronic Lyme. All of us except my husband have CNS/neuro symptoms worse than anything.
Can anyone help calm me down? I don't think my daughter has muscle weakness. I get muscle weakness sometimes but it comes and goes. I don't want fake reassurance... I just want people who have been there who might have something positive to say.
-------------------- 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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I had it enough to be bouncing up and down in bed at night....11 months of treatment and not well yet but those are gone. Give it time...this crap just sits on our nerve endings.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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blinkie
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Member # 14470
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I have had lyme for more than 10 years. Was rebitten and got bart and babs to go with it.
I ended up housebound, not functioning. Many days I could not blow dry my hair.
Nearly two years into treament, I moved my family in 110 degree weather, woke up the next day and did it again, then spent a week painting the house. I am nearly well.
My husband has now tested with some positive bands and symptoms. He treated for a year and is doing well.
I have a 6 month old son that may have lyme. We won't know for a year. I just keep reminding myself how far I have come and that it will happen for them too.
Will we reach remission, get off antibiotics, and remain well? I don't know, but I can't think about that. It's too frightening.
My advice: don't think about the future. Think about today and be thankful for small improvments. None of us know if we will be here tomorrow, lyme or not...
Don't panic...it won't change anything.
God bless you and your family. You will be in my prayers...oh yeah...the Grace of God has helped me more then anything else besides antibiotics.
Posts: 1104 | From N.California | Registered: Jan 2008
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Ugh...I'm so sorry about your family all being infected.
I got acutely sick April 2006, laundry-list of symptoms inclusive of body wide muscle twitching. 17 months into treatment, still twitching. Some days more than others, but have not had a "twitch free" day in well over 3 years.
I'm still here. Still pretty sick with Lyme and company....but, pluggin' away. Can't answer the question as to which of the multiple infections is responsible for the twitching....hope things improve for ALL of you. TS
Posts: 566 | From West Coast | Registered: May 2008
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How is your magnesium intake? The recommended amount for lymies is 800+mg per day, in divided doses.
And you might want to do an archive search on lymenet for ALS. It has been discussed a number of times in the past.
Posts: 8430 | From Not available | Registered: Oct 2000
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Brussels
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Member # 13480
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Ickyticky, I was just re-watching some of dr. K's DVDs some weeks ago and he said that about 70% of the US population are borrelia positive? (I gotta see again to get the right percentage).
He said something: if one is borrelia positive without symptoms, the person doesn't have lyme disease for him but a catastrophe could be in waiting list (or not).
If one is borrelia positive with symptoms, he's got lyme disease. As simple as that.
Most people with any sort of disease will be then borrelia positive and then have lyme disease (if the proportion of infected with borrelia is so high... If not 70, it was something amazingly high, I didn't retain the number).
I test people (only energetically) and I see more and more people with borrelia. It's in kids, mothers, less in adult males though, but in dogs, sheep, boys of young age as well as girls...
Dr. K. said he's never read anything in the literature of a symptomatic borrelia positive person (with blood tests) becoming symptomless and cured by oneself.
Borrelia will not disappear by itself. He never seen that happen.
so to my understanding, if the person is positive to borrelia, and symptomatic, unless a proper treatment is administered, the person will be ALWAYS a lyme sufferer !
There are GREAT chances that many (if not most) people you know are in fact lyme sufferers, some with stronger degree of 'disease', some with smaller degree of 'disease'.
Not only borrelia, but many more other infections (candida, for example, tuberculosis, and many other pathogens) are all around in people you think are 'healthy'. And not 'unactive' but VERY active infections! They just don't know because they don't have a name for their ailments!!!
If you have borrelia, you'll probably suffer from candida sooner or later too. The two seem to go hand by hand, even if you never took any antibiotic for lyme.
many people suffer from candida, and call themselves healthy. They never make diet, they don't go to the doctor, unless the infection starts to create stronger visible problems.
They get brain fog from candida, some degree of fatigue, intestinal gas, fermentation, crave sugar, some vaginal candida, skin or hair fungi, but they don't think this is chronic sickness.
Same for borrelia. Many people I know (I think about 50%) are borrelia positive in energetic tests. Many (if not all) have some lyme symptoms but they will NEVER think they have lyme disease.
It's all in the mind and also in the DEGREE of disability.
I keep reading here in LN that doctors don't believe in chronic lyme. True. But not only doctors, the common population either!!
They think they are not sick with lyme, even if they live in endemic area and have history of tickbites. I see people with EM rash history NOT believing they have lyme (WITH lyme symptoms)! THIS IS outraging for me!
I woudn't fix too much on the IDEA of being UNLUCKY because my whole family has got lyme disease. You are an INFORMED person, you know now what you are fighting.
I find you are a LUCKY woman to KNOW what you and your family are fighting!!
I find it more sad and urgent for ALL THE OTHER people I see, that are almost CERTAILNY sick with lyme, but have NO CLUE they are fighting borrelia!!! Even if I tell them, get a test or so, nope, no way. They think I'm nuts. their doctors say 'it can't be lyme', they believe their docs.
I truly hope you don't have the A.. diagnosis. Truly hope so. I can't imagine how devastating this could be.
My daughter had lyme too, we have battled this crazy disease for years (except for hubby who RARELY gets bitten by anything)... No one in the family and friend circle REALLY believed me, that I could be sick with an infectious disease. As usual, they thought most of it was psychological.
No one believed that we both could go crippled or die with it. They now believe me, for a single reason: daughter got a swollen knee and got to hospital, and the doctor said it could be borrelia.
But we've been fighting 4 whole years alone before they finally believed!
I felt unlucky too. Why me? Why after borrelia, my daughter had to get tick born encephalitis on top while my neighbors seemed so healthy?
NOw I consider myself a lucky person, to tell you the truth. I'm lucky because I fell sick before my daughter and then, when she was infected, I knew what to do despite almost zero medical help. Without no family help.
We are healed, I think. I mean, our lyme is dormant. But my 'healthy' neighbor kids still suffer from headaches, allergies, digestive problems... Many cough the WHOLE winter non stop. While me and daughter are symptomless, catch minor colds here and then but get well fast.
I mean, you have a NAME for your disease and can go looking for a treatment for it!
I know SO MANY people battling an invisible disease, even people with EM rash history, that still DON'T believe they have lyme despite ALL their symptoms.
I get desperate for these guys, really. I know their future is dark because they'll never stop being sick unless they treat the cause of it all.
I am crossing fingers that you and your family will get better from now on. Don't consider yourself an exception because everyone there has lyme. Lyme is MUCH more common than we think.
Consider yourself an exception to have FOUND OUT that you all got lyme, and that you have the chance to recover with proper treatment.
Most people recover to a degree. Some lucky ones achieve remission. But if you keep reading LN, you'll see that most find with the months / years their own ways to get on treating and getting better.
Muscle twiching is a very common symptom of neurolyme. It's not enough for an ALS diagnosis. Do a search here, many have muscle twitching.
You'll need positive energy to help yourself and your family to treat and get better!
Posts: 6196 | From Brussels | Registered: Oct 2007
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I have a friend who has twitches and seizures, among many other symptoms. She's had them since she was 16, she's now 28.
Her symptoms come and go. She has neuro symptoms too, which led to 12 years of a dx of bi-polar. She finally found out about lyme a year ago. She'll be under treatment for a very long time.
Dr Martz (in Cure Unknown and Under our Skin) was dx with ALS and was told he would be dead in a year.
It was lyme.
The odds she has ALS are many millions to one. The odds she's manifesting known lyme symptoms while testing positive for lyme are excellent.
If you haven't read Cure Unknown, you should read it. Especially Dr Martz's story.
I believe Amy Tan the author was tested for ALS too. (Her story is online somewhere, you can google it). It was lyme.
Anyway, I hope that brings some perspective. Lyme is tricky, and will manifest all kinds of screwy symptoms that look like something else.
Good Luck,
James
Posts: 872 | From New York City | Registered: Jun 2008
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i am so sorry you are going through this. I hope this doesn't sound too simplistic but are you taking extra magnesium? Lyme eats mag up. Since, I have been taking a lot more my muscle spasams have decreased. Sometimes, something simple can help a lot. It might be worth a week of at least 12oo mgs in three seperate doses. I hope you find some peace and help, good luck to you and your family.
Posts: 161 | From sonoma county | Registered: May 2009
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You should see how many people in my town have ALS, Parkinson Disease, MS and even scleroderma. I wish I had the numbers and was able to compare them to the incidence of these diseases in the general population. I am sure it is way, way too high.
What I would bet most all have in common are tick bites. Dr.'s here are getting better at testing for Lyme disease and coinfections but have not moved beyond the short course of doxy to cure.
It is all too common to see people's health fall apart.
Brussels has so wonderfully written what I have thought. I was diagnosed with MS, possible scleroderma, fibromyalgia... but I was sick because I was infected and symptomatic.
If I did not at least take a chance on treatment, one thing I know is that my kids would not have the Mom they have now (and sometimes I think that my limitations now are tough enough!).
All the best.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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Try not to worry about ALS. I have lyme, bartonella, babesia and erlichia. I had lots of muscle twitches and muscle weakness before treatment.
I've been in treatment now for over a year and these symptoms are gone now (along with all my other symptoms, as well).
Lymers
Lymer
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
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Icky I am so sorry you are going through this.
May I ask which lab did your tests? I am wondering
if childrens show up better than adults. Meaning
they produce more antibodies? I am going to test my
daughter but leaning more toward a challenge first.
I would bet your doc was just thinking out loud
of the symptoms. I would not think any more about it.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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My husband has had twitching (mainly upper lip and eyes) for as much of his life as he can remember.
He is a great man with a good heart. He works his but off and somehow has more get up and go than I do.
I found out I had lyme, and got my husband and daughter tested, and they have lyme too. I want my 19 year old to get tested, but he is in the Marines and scared to get tested right now.
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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We have ALS in my family. Mom died of it and so did my cousin (her niece). BUT the question still remains whether or not it started out as untreated LD.
When I think back on it I realize the terrible arthritis Mom had. And the headaches. And on and on. She had predictably lousy medical care because my brother, uncle, nephews are all strict, by the book, traditional doctors. I am fairly certain she was never tested for LD.
I think that there is a genetic component to all of this neuro stuff. But when the illness is treated, it doesn't get to the extreme of ALS. I have been ill for 21 years, am very sick now, but not THAT sick, thank goodness.
The new doc I saw this week found my family history very interesting,he said. He is taking my speech, swallowing, dizzy, memory problems very seriously. But he told me not to worry about ALS. He is certain that he can reverse my symptoms with the right abx.
I do know for a fact that abx can work. Six years ago, after 6 wks in hospital on IV's 2xday for septicemia, I walked out of the hospital with perfect speech. I had been wheeled in, barely able to sit up. Who knows, maybe if I hadn't been "lucky" enough to get septicemia I would now have ALS!
The new LLMD said it was a shame that the docs back then did not continue my abx. They had no idea why I got better and called it a "miracle". Everyone in the hospital called me "Miracle Lady". No one thought at all about LD.
So don't worry and get better! I certainly intend to do just that!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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I forgot to add a note about family LD. My husband has had fibromyalgia for some years. My new doc wants to test him for LD.
So we asked about contagion. He replied that when they put two female mice together, one with LD, the other one got it. They think it is because they cuddle and exchange saliva. He said that couples get it because they are so close. But it is not an STD. He treats many couples in his practice.
But when there are ticks around, it would follow that many family members can get it. Add the genetic factor and voila!
I am currently trying to figure out how to spray our property so our grandkids are safe. With all the deer and wildlife running around here, it seems a daunting task to eliminate ticks! We are careful to bathe and shampoo them after they have been playing outside. I wish they could come up with a vaccine!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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IckyTicky
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Member # 21466
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Gosh you guys, thanks for the encouragement!
Brussels, thank you for the lesson. I have heard that there is the idea that most of the US population has Lyme and doesn't know it. It is just called different things... MS, Fibro, Chronic Fatigue etc. I am going to get that book and educate myself further.
Pinelady.. my test was done through IgeneX, Quest and Labcorp I think. I tested pos. on all three of them. My oldest was also tested with those three labs, as well as my husband. My son for some reason was only tested through IgeneX.
Co-infection testing was done through IgeneX but I'm told that co-infections are hard to get positives on?
All of you guys are great. I may not even need a valium tonight
-------------------- 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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Lymeorsomething
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You can have simple thyroid problems and have muscle twitching. It's nothing to panic about. It is also extremely common with lyme so don't sweat the ALS thing...
I have muscle twitching as well yet walked a good 100 blocks in Manhattan yesterday so it's not always cause for concern
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Muscle twitching, name me a lyme patient that doesn't have that. I have it too. My LLMD does agree that it is neuro, but not ALS...
I have seen 2 people in my life with ALS, they very quickly lose all motor and body function.
I would not worry about it at all. Don't worry about something that hasn't been proven, it will just mess you up mentally.
Posts: 458 | From Miss | Registered: Mar 2009
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Shosty
Unregistered
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I can't believe your LLMD said this to you. I would talk to the LLMD about the effect this reference to ALS had on you. If he/she does not apologize or show awareness of the inappro-priateness of the comment, I would get another doctor.
Don't panic. There are all common symptoms for Lyme.
My family also has had Lyme, and two of us have chronic symptoms that may be Lyme, but may also be from lupus triggered by Lyme, that antibiotics don't touch.
We suffer, yes, but we treat this as a chronic condition and live our lives. We do not dwell too much on the illness, and know it could be worse.
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Just Julie
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I have had muscle twitching for 9 YEARS.
I was bit by a tick in 1987, diagnosed 13 years later, in May 2000. My muscle twitching started May 5, 2000. I will never forget the date, because I went online, googled (or searched, not sure if google was there in 2000) and when I typed in "muscle twitching" I got MS, ALS. Freaked me the hell out!
But, in the 3-4 years of continuous abx taking, my muscle twitching never resolved. It would become intermittent, and leave for a month or 2 at a time, but it always came back.
the one thing I could notice tied to them is that when I would undergo a great period or time of stress, where I KNEW my adrenaline was pumping, I would notice the muscle twitching become more prominent.
Both my sons, diagnosed with lyme at ages 7yrs and 10 yrs old, slowly began to have their muscle twitch too! They did not start out in the beginning of their years long treatment telling me that their muscle twitched, and I did ask (I'm a nurse).
So, I think it either can be one of the beginning symptoms, or come up later, from what happened to us.
My LLMD never addressed it, other than to tell me to try magnesium, which I did, and in my case, IT MADE IT WORSE! Truly, all of the mag preparations I tried, I noticed an increase in the muscle twitching. So, I stopped it completely.
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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And remember also, there have been people diagnosed with "ALS" and then treated with Abx. They got better! Stay on the abx.
Posts: 374 | From United States | Registered: Nov 2008
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I just wanted to chime in and say that I agree with Julie. I have been twitching consistently now since January 2007. It will be 3 years soon and I have yet to have a day that I don't have at least a few twitches. I went thru the whole ALS thing and it will terrify you. I look at it this way, I would probably be dead by now if it was ALS.
One good thing to remember is that with ALS, both my LLMD and Neuro told me the twitching will be in a particular area, not bodywide. It is usually towards the end of the life of the particular muscle as it shoots out random "sparks" before it dies off completely. I know that sounds creepy, but let's face it, I am sure your daughter's twitching and also yours as well are not like that.
Lastly, I have to mention I tried all the Magnesium stuff previously that people have suggested and it has done absolutely nothing. I am starting to think that this may just be the residual affects of Lyme that I may have for the rest of my life. There is something called Benign Fasciculation Syndrome which I believe the twitching could be caused by. It has something to do with being triggered by a virus or bacteria. They are not sure what exactly is the cause, but it is not ALS. The have done a study showing over 100 people with BFS showed no signs of ALS 10 or more years done the road.
One more thing, although I twitch allot daily, it has not kept me from working full time, taking vacations, exercising and living my life. Actually, I had a tag sale today. Life is short so go out and enjoy it!
I know it's allot of info, but I just thought it might reassure you.
Posts: 157 | From connecticut | Registered: Feb 2007
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Just Julie
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I know I took great comfort GREAT COMFORT when I hit the 5 year marker. To me, if I wasn't in a wheelchair (MS), dead, or on a ventilator (ALS) by then, then I did not have either of those fatal diseases!
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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IckyTicky
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Thanks guys. I feel much better about this. I've had this muscle twitching for 1.5 years and I would figure that, by now, I would have some kind of muscle weakness that didn't get better if it were ALS. I do get muscle weakness, or percieved muscle weakness..but it always gets better. I don't think that happens with ALS.
Muscle twitching was what had me sending my teenager for testing. My little boy has muscle twitching so far only in his hand (that he has noticed) and my little girl only in her eyelid so far (that she noticed).
While I still have it daily, and some days worse than others.. I think it's a lot better than it was 1.5 years ago.
One thing my LLMD did stress to my teenager was to STAY ON the abx. She has a hard time detoxing and she was taking breaks from the abx without informing me (she had been at her dad's all summer)
My LLMD hasn't said anything about magnesium, but it's worth a shot right? It can't do any harm?
You guys are great. I'm so thankful
-------------------- 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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Tracy9
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By the end of this month, all four of us in my family will have PICC lines and be on IV antibiotics. My husband and one child already have them.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Just want you to know that I am thinking of you and your whole family. There has been a lot of great advice for you and this thread, but I wanted you to know that I am sending prayers your way.
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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Brussels
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Member # 13480
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Ickyticky, get the magnesium, transdermal iodine, enzymes, get binders like chlorella, charcoal, whatever fits for you and family,
get your milk thistle for liver cleanse, start an anti candida diet (even if not 100%, but something in that direction), try to eat fermented foods daily, get to the sun when it's sunny and you can stand it, get out from EMRs if you can, walk, get your daily fish oil supplement...
If you do that, you'll be doing what MOST lyme sufferers are doing and getting slowly the benefits from it.
Only ABX is NOT what most lyme sufferers take to get better. At least, not the ones with chronic lyme. You need GI support, liver support, kidney support, some lymph drainage support and healthy food and life style. You need to supplement what infection took out from you (magnesium and iodine is just a few common stuff).
You're a lucky woman to get informed and I do hope you will get better, whatever approach you choose to treat you and family!
I would also do a test for food allergies and get 100% away from foods that cause allergies because they deplete us from energy, our WHOLE body gets on 'attack' mode and we have MUCH LESS energy to fight infections and deal with toxic load that will come with killers (abx or herbs or whatever you use).
Besides if affects digestion, not only of food, but of remedies.
Most long term lyme sufferers are allergic to many foods.
I also read recently in dr. Mercola's site, that if his patients suffer from a chronic disease (whatever this is) and have a mouth full of amalgams AND root canals, they USUALLY take MUCH longer to heal. That is also my general impression.
The more bad the situation in your teeth, jaws, the worst for general health. I would take a look into that too. Bad teeth usually means bad food consumption.
The patients who have less teeth problems (more healthy teeth) usually recover much faster.
Kids usually recover MUCH faster than adults. That's a general rule, I think, also for lyme, no matter what treatment you choose. Possibly because their immune system is better, possibly because they got less acumulated toxins, or that their teeth is better (?).
You'll need the strength to fight, don't waiste energy on unfruitful thoughts. Many here, as you see, have been in your shoes, and most improved.
Read LN for the next months to come, you'll see that most people improve with proper treatment, no matter which treatment they choose.
The only thing to do: NEVER GIVE UP.
Treatment is not easy. If it is easy, consider yourself a VERY LUCKY person!! If it's difficult, you're just like most of us. You're not unfortunate or an exceptional case.
Some exceptional cases are EXTREMELY tough cases though, that take very long to react to any treatment whatsoever. But these are more exceptions than rule.
that's my general impression. I was very pessimistic, specially after the shock of knowing I had lyme. We all passed through that intial shock.
Now I'm optimistic. I know there are treatmetns that DO WORK. And I'm no longer afraid of ticks (not to the point I was years ago), of falling sick again. I'm fully back to life, my daughter too, and I find myself a lucky person.
Not because I caught lyme, but because I knew what was wrong and that I could then treat myself and daughter fully, and we're fully back to life. and not only that, the disease made me analyze my whole life style I was brought up, made me critical to most dentistry, most medical profession, made me take my life in hands and I do hope my daughter's health will be better than mine just because of what I now know. All thanks to lyme.
Knowledge is power.
Posts: 6196 | From Brussels | Registered: Oct 2007
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I have body wide twitching too. It drives me crazy and is scary. Mine definately comes and goes. Very small twitches, un noiticed by others.
Does anyone else feel kinds jittery and spacey too when they get twitches? I'm experienceing horrible twitching today and feel jittery and kinda shakey.
I've been worried about MS and ALS as well, but from what I've read those don't produce the full all over body twitching.
They are more confined to a particular area (usually partnered with weakness).
I also get horrible arm weakness that comes and goes. It's more like a tired heaviness than actual weakness.
I don't think I'm any weaker as in strength, but just feel SO heavy. This comes and goes too.. I think ALS and MS symptoms are definately more lasting and don't shift from day to day.
My thoughts and prayers are with you and your family.
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Icky Ticky, What part of Texas are you in? I'm asking because there was an outbreak of ALS in the Huntsville area in the early 1990s - over 2 dozen deaths from ALS in a community of only about 33,000 population.
I know one person whose 17 yo daughter was diagnosed with "suspected" ALS by a neurologist at Baylor College of Medicine in Houston. However, she found a doctor who agreed to prescribe long-term doxycycline and her daughter recovered within about 9-10 months of continuous treatment. The daughter is now in her mid-30s and is the mother of 3 very healthy children.
In retrospect, I suspect that that ALS outbreak might have been a rare form of mosquito-borne TBE (tick-borne encephalitis) instead though because all of the cases occurred around and near the Trinity River area. Of course, there are a lot of ticks in East Texas, especially around the entire Trinity River area which goes all of the way north to Ft. worth, so perhaps it was something vectored by ticks instead of mosquitoes.
According to the medical literature that I've seen, TBE is associated with ALS, but my impression is that mosquitoes can also be vectors of TBE, if memory serves me right. (It's been a long time since I've reviewed any of those medical articles though, so my memory might be foggy.)
If you need more reassurance, I can put you in contact with the mother of this former "suspected ALS" patient. Send me a PM if you want her contact info.
Posts: 4563 | From TX | Registered: Sep 2002
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
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TX Lyme... interesting about the ALS outbreak maybe being a mosquito-borne TBE. I live in Austin right now, and lived in Brownwood, Tx for a few years. But I am originally from TN and also lived in GA. Had family in Arkansas so I was there a lot too.
I tested + for RMSF (I guess an old infection? I never broke out in spots) and I also tested + for Mycoplasma and it showed that I had exposure to West Nile virus (I lived near a river in TN and possibly got that from a mosquito?)
I believe I have had encephalitis before, back in 03 when I got so very sick and was out of it for days hallucinating, brain felt like it was swollen and tryin to lift my head off the pillow was excruciating pain. The Dr in our small town told me she thought it was strep throat even though my test was neg for that. I felt like I was dying and I remember thinking to myself that I'd rather die than deal with this pain I was in. But after several days I was alright again.
LiesAndMoreLies... thank you so much for your prayers!
Brussels thank you so much for all the info and suggestions! With paying for LLMD for all of us, we can't afford much of anything at all (I don't know how people can possibly afford Lyme treatment for their whole family, even with herbs and supplements!) I'll just do what I can do and try to get the basics. We have already adjusted our diet tremendously. No processed foods, we only use olive oil. We aren't vegetarian but we only eat meat maybe once a week or so..and that is usually chicken. We do use eggs for more protein. We don't drink milk or eat cheese. Not much sugar at all. When we do, it is raw and unrefined. And I'm trying to use my juicer a lot more. And I have alkaline drops for our water. I'll read through your list again and see what else I can do that won't completely break us financially. I'm trying to find a GOOD, proven probiotic that is dairy free and doesn't cost my firstborn.
Tracy.. does your insurance cover all of you to have IV abx? We can barely afford mono-therapy orals for all of us right now.
-------------------- 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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