posted
Hello, I hope someone can share their story to shed some light on these annoying twitches. I went to an infectious disease doctor today who viewed them “popping about” and told me that my muscle twitches (called fascinations) were more indicative of motor neuron disease than Lyme. That is very scarey to say the least! She also told me that my positive western blot test could have a 40% chance of false positive and retested me (waiting for results). I also have bone pain, and numbness (in morning). I have been treating Lyme with Chinese herbs after a round of Doxy for 7 weeks. Anyone have these and not have ALS? Tia for your help 😊
Posts: 6 | From new york | Registered: Jul 2018
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Western blot tests usually don't have false positives.
I see some of my twitches, especially when they are right under my eye. Twitches don't happen often anymore, though.
Treat as if Lyme until absolutely proven otherwise--that's just my opinion.
Blessings.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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posted
visible muscle twitching is common for Lyme and/or Bart. Mine improve with treatment, and you should stop seeing that ID duck and find a real LLMD.
Posts: 119 | From ground zero | Registered: Mar 2014
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posted
Thank you so much! I definitely will stop seeing that Dr. (for my mental health alone). I was bitten by a tick in April 2017 and really didn’t have many symptoms but received a two day Doxy treatment. My symptoms started with twitching shortly after an appendectomy this winter so I guess you can say it was dormant for about a year. I was given antibiotics for a short time after the surgery. I don’t know if that has any correlation to symptoms of Lyme or bart coming out?
Thank you all so much for the reassurance although I have to admit that it’s hard to convince myself that it isn’t ALS.🤦🏽♀️ Tickbite666, can I ask what treatment you received?
Posts: 6 | From new york | Registered: Jul 2018
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posted
I'm sorry that doctor treated you so poorly. You know you were bitten by a tick and tested positive for Lyme Disease - you know what you have. ALS is a common misdiagnosis of Lyme. Also, Western Blots don't produce false positives. They are well-known for producing false negatives. I would discount everything that doctor said, and instead go to a Lyme Disease Specialist. If you post in the "Seeking A Doctor" forum, people can recommend Lyme Specialists in your area.
Muscle twitches are a common Lyme symptom and they will go away with treatment. In the meantime, you can take a Magnesium Malate supplement to help
Best wishes <3
Posts: 241 | From New Jersey | Registered: Jan 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The thoughts & advice of everyone one is solid.
Yes, of course, lyme sounds like it needs to be addressed as well as coinfections assessed (and some of those need totally different treatment than lyme does - totally).
Find a proper LLMD.
However, first and foremost of things to do right now, today - learn about magnesium deficiency.
That often goes with lyme yet, while you wait to sort out what else to do, you can read up on the importance of right now exploring the right kind and right dose (at least 3 x a day, not all at once).
A specific red blood cell - intracellular test helps yet you can at least start a basic approach now. That is intracellular test, inside the red blood cells where they look -- not serum, as in free floating in the blood.
It could stop the twitches, or at least calm them down.
It's not going to "treat" lyme directly yet it is vital part of any treatment and also of many person's wellness care even if they don't have lyme but might have magenesium deficiency. Since lyme is part of your picture, magneisum's even more vital to be in your life.
Hand-in-hand with what you can do now to help ease your symptoms and support your body is something like MILK THISTLE or DANDELION. That the twitches started after your appendix surgery suggests your liver toxin load might have been overwhelmed both by a toxic appendix and also Rx or OTC substances taken during that time.
Even if not for all that, in preparation for a better - a proper - lyme treatment plan and assessing of other tick borne infections, you can now start on a basic liver support, much like what you would do with any lyme treatment.
Now, it could help ease some symptoms as you get your full plan in place.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
[ 11-07-2018, 12:43 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Your diet, your beverages, too, needs to be examined for any agent that is excitaory in action. I would even question any lip balm or substances put on lips (for what goes on our lips, we are basically eating).
Also if you have gas heat, etc. check all the fittings that come into / are in your home. Do a daily air fresh air flush of your home no matter what kind of heat source you have.
See post: Caution: Aspartate; Glutamine; and Phenylalanine (3 excitatory amino acids that can be wrong for us when added as supplements, beyond a normal dietary level)
Seaweed has its own natural MSG and can be very excitatory -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You wonder about "ALS?" Untreated lyme can look like ALS sometimes. See the documentary "Under Our Skin" for success when that was sorted out. It's happened more than once that ALS was the misdiagnosis for lyme & compounding other tick borne infections. A top consideration.
As to what your (hopefully previous) doctor says:
". . . more indicative of motor neuron disease than Lyme."
Not true. First, when untreated lyme is on the table -- your symptoms are indicative of lyme. Motor neuron disease can come from not treating lyme. It can be separate but lyme is the major component to face.
and that [your] "positive western blot test could have a 40% chance of false positive and retested me (waiting for results). . . . "
You did not need new tests. Likely they will spoil whatever chance you had of getting respect for the first test.
There can be false negatives, for sure.
There are nearly no false positives when lyme shows its head along with classic symptoms. It's there or it won't register (other than in just band 41 which then need follow up).
Find a real lyme literate doctor for a proper evaluation / assessment. Your current doctor is not educated as you require. This may not be her fault as it's the way the medical system runs. But you should run to a doctor who has the expertise, one who has completed the physician training course through ILADS. See below.
When that other test comes back, get a paper copy for your own file of the full test, not just the results. See some of the common pitfalls:
Herbal Safety considerations & reference books; etc.
BOOKS - Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
knowing which methods offer assertive & direct impact, which are only support and which are both. And when to use what, how to combine, & when to step back.
Safety links . . . &
You can compare and contrast many approaches with links to articles, books, methods . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Question everything - everything - that your current doctor suggests you take / do.
That current doctor will not know . . . though
First, find out if whatever is suggested to take into your body is okay for those with lyme. Or, if it's okay IF you take certain protective precautions beforehand.
Lyme changes just about everything in the way a body can react.
Cautions for: Steroids, vaccines, OTC items like acetaminophen or ibuprofen --- they all can react very differently.
Magnesium can often be a good substitute to manage pain. If you take acetaminophen be certain to have good liver support. With ibuprofen, kidney support is necessary.
Just about any Rx can sometimes with opposite effects of what was intended - especially for some neuro & mood drugs. Again, lyme changes so much about the state of the body and how it reacts to all kinds of chemicals.
Even aside from lyme, though, so many Rx have side effects that you need to learn about first. For any Rx recommended, I estimate about 10-40 hours of a personal homework is required to just get to how it works in the body and find the places where you can read honestly about the side effects.
I hope you can find a LLMD very soon to help you sort out what all is going all and also direct treatment and support methods. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by gardengirl333: Thank you so much! I definitely will stop seeing that Dr. (for my mental health alone). I was bitten by a tick in April 2017 and really didn’t have many symptoms but received a two day Doxy treatment. My symptoms started with twitching shortly after an appendectomy this winter so I guess you can say it was dormant for about a year. I was given antibiotics for a short time after the surgery. I don’t know if that has any correlation to symptoms of Lyme or bart coming out?
Thank you all so much for the reassurance although I have to admit that it’s hard to convince myself that it isn’t ALS.🤦🏽♀️ Tickbite666, can I ask what treatment you received?
gg333,
Bit by tick July 2005, got EM rash and treated with doxy for 28 days. No symptoms until March 2008, then spent year with a neuro, then a year with a rheumy before getting myself in with an LLMD in March 2010. Been treating very aggressively since. Can't get much over 90% then if I wean off ABX I relapse.
[ 11-07-2018, 02:32 PM: Message edited by: tickbite666 ]
Posts: 119 | From ground zero | Registered: Mar 2014
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posted
I am so thankful for your advice- all of your input helps!! I left a msge with a prominent IlADS Dr today. I hope he will tell me too that this is all Lyme and co infects doing. I'm too scared to go to the neuro at this point. I know you had mentioned Bart. I have been following a very strict diet of no sugar gluten, or dairy and drink lots of water. The herbalist I go to suggested juices (fresh). She has me on glutathione, milk thistle along with some Chinese herbs that I can't pronounce in tea form 2x per day but I think the herbal route may not be as aggressive as I'd like. Tickbite, that's troubling that you can't get better completely. I hope you get to 100% soon. You guys are so amazing - thanks again for your advice!
Posts: 6 | From new york | Registered: Jul 2018
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