My symptoms started in November 2016 - intense headache along back of my head/neck, diagnosed as occipital neuralgia. A week later I had a sudden onset of floaters in my vision.
Have developed muscle fasciculations/twitching, some cramping all over body, and one side of face droops (not significantly). Also developed palpitations and incredibly fast heart rate. I just feel sick.
I've seen neurologists, a neuro-ophthalmologist, cardiologist, hematologist/oncologist. At this point I'm just terrified I have early symptoms of ALS.
I had an EMG done two weeks ago and the neurologist said there were "only benign fasciculations." Tested negative on Western Blot in March 2017. Any help would be greatly appreciated.
(breaking up the post for easier reading for many here)
[ 05-06-2017, 05:04 PM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
Yes, unfortunately you are in the Lyme camp, or maybe fortunately, as you are finding out here what you've got. All your symptoms, including the face droop - called Bell's Palsy, belong to a Lyme infection.
You've been through the usual testing with no results. Western Blot tests often come back negative, even though someone has Lyme.
ALS is one of the presentations of Lyme. It's looking like it is Lyme.
You can learn more about what's going on by looking at a sticky at the top of Medical Questions, "Important Information about Lyme and Co-infections." Include reading the Burrascano guidelines, also the 27 reasons why the Western Blot doesn't come back positive.
Care for Lyme lands in three areas - kill/deter the organisms, detox, and fortify the body. We discuss all three areas here extensively.
We also have a Search function at the top of the page - you can click on it, type in any word or phrase and archived threads will come up that you can read through. Just know we're all different in what we respond to and that's our task, to discover the treatments that work for us.
Each symptom you mention, we can discuss possible remedies, although we're all different when it come to what works.
For example, for me, I can stop all Lyme eye symptoms, including the floaters you mentioned, by drinking mangosteen juice, an anti-inflammatory juice. I like the Mango-Xan version, as it's the most tart. Found in health food stores and online.
For the muscle fasciculations and heart palpitations, it mean low magnesium, as the bacteria use up our magnesium for their reproduction. So we all pretty much need to take a form of magnesium and we discuss that here. You can also do a search for magnesium and read discussions.
I also suggest you learn something about the bacteria, because then treatments will make more sense.
Also Tincup here has informative sites listed at the bottom of her page. You can click on one of her posts to see them.
I call it going to Lyme school - just be patient as you learn what's been going on and what to do. You will feel better again!
Also, most people contract it from a tick bite. Some see the tick(s) and some don't. Like I had a known tick bite before my symptoms started. I also suggest you study prevention information too, as in bug repellent, etc, as you don't want to get anymore exposure.
Posted by Lymetoo (Member # 743) on :
Welcome!! Could you please list your positive bands on the Western Blot??
If you don't have a copy of your test, ask your doctor's office for a copy. It is your right to have it and you need it.
Thank you both for your replies. As far as results go, this is all I have:
ELISA: LYME ABS Result: 0.30 <0.90 {index_val} F ELISA
Western, this was done at LabCorp, I don't know if I just didn't have bands run or what, but I'm copying this directly from the test: Lyme Ab/Western Blot Reflex Lyme IgG/IgM Ab <0.91 Ref Range: 0.00-0.90 Negative <0.91 Equivocal 0.91 - 1.09 Positive >1.09
Lyme Disease Ab, Quant, IgM <0.80 Ref Range: 0.00-0.79 Negative < 0.80 Equivocal 0.80 - 1.19 Positive >1.19 . IgM levels may peak at 3-6 weeks post infection, then gradually decline.
Posted by mcp1988 (Member # 50279) on :
Robin, regarding the magnesium, unfortunately I was tested and my levels were normal. I was praying they weren't, as that would be an easier fix than some of the other causes of fasciculations.
Do you know if, in Lyme, fasciculations can still occur absent a magnesium deficiency? Or is that always or usually the cause of fasciculations in Lyme?
(breaking up the paragraph for easier reading for many here)
[ 05-06-2017, 06:17 PM: Message edited by: Robin123 ]
Posted by mcp1988 (Member # 50279) on :
Also, regarding tick bites - I know for a fact I was bitten two or three times when I was around 9 - 12 years old when I was at camp. My mom removed the ticks (don't remember how many days later), and that was that. As far as any other bites, there are none that I can recall. For reference, I am 29 now.
Sorry for the additional posts - if I should combine them into earlier ones, please let me know and I will do so!
Posted by Robin123 (Member # 9197) on :
Muscle twitching, cramping and heart palpitations mean magnesium deficiency, in my understanding. Others will discuss the issue here as well.
Up to you if you want to combine in one post or make another one. If you want to combine, click on the icon with the pencil to edit.
Posted by mcp1988 (Member # 50279) on :
Okay, thank you.
Posted by Robin123 (Member # 9197) on :
Re your early tick bites, not all ticks are infected, so you may have lucked out then. Ticks are tiny enough that many never see them.
In my case, I had a female tick camping out in my foot and that's how I found out when the clinic told me as they removed it.
I suggest getting educated about using tick repellents. I like orange essential oil - I put a few drops in a spray bottle, fill with water and spray on my clothing and gear when I'm going out into nature. Use other essential oils for skin. We discuss the topic alot here.
Posted by mcp1988 (Member # 50279) on :
I will definitely do so, thank you!
It was crazy how it all started. My mom thought I had meningitis, and told me to go to the ER (sudden neck pain, nausea, fever, tachycardia). Since that day in November I haven't felt the same.
Also, in addition to floaters, my nails changed - vertical lines and horizontal bumps.
I appreciate your help, and your clear dedication to the community. I have two cousins with Lyme and I know they still struggle with it daily.
(Edited for additional information)
Posted by mcp1988 (Member # 50279) on :
Lymetoo,
I was wondering if you, or anyone else, could shed any light on the type of test I had run.
I've tried to research as much as possible, but can't make sense of a lot of it.
Posted by dal123 (Member # 6313) on :
I've seen many people with CDC positive Lyme test negative on the ELISA , labcorp is terrible. Get tested through IGENIX.
Posted by mcp1988 (Member # 50279) on :
Okay, thank you. I'll look into doing that asap.
Posted by TF (Member # 14183) on :
Yes, the mild facial drooping is a sign of a mild Bells Palsy. I had that on both sides of my face for 3 years. I thought I was getting old. It made me look like I was scowling all the time.
Then, one day I woke up and it was totally gone!
In the state of Maryland, doctors and hospitals are REQUIRED to test any person with Bells Palsy for lyme disease. That is because it is such a significant symptom of lyme.
A good lyme doctor will send your blood to a tick-borne disease specialty lab. Igenex is a great one. There are a few in the east also.
Jump on this. The sooner you get treated for lyme, the better.
If you want to see a very good lyme specialist and are willing to travel to D.C. or the outskirts of D.C. every few months, let me know and I will send you names of great doctors who treat only lyme.
YOu would be in good hands with them.
Posted by mcp1988 (Member # 50279) on :
I would really appreciate if you could send me some names of doctors!
Every doctor I've been to told me they can't tell any difference in my face, but it blows my mind because I take a picture and I know it's not how it looked three months ago.
One side is puffier along the nasolabial fold. The lip on that side turns down too, diagonally from the other side. And my bottom eyelid on that side is drooping.
Given the cramping and fasciculations, my biggest fear is ALS. Just praying - really, really hard - it isn't that.
Edit: Re being tested if presenting with BP, that's a great rule. I went to a well-known hospital in Philly and once they ruled out stroke, the neurologist told me "it's probably conversion disorder"
Posted by TF (Member # 14183) on :
I sent you two names. You will be in good hands with either one.
Regarding magnesium levels, see this quote from Burrascano:
"Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency. Magnesium is predominantly an intracellular ion, so blood level testing is of little value." (page 6)
"6. MAGNESIUM (required) Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition. The best source is magnesium L-lactate dehydrate (“Mag-tab SR”, sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on “cal-mag”, calcium plus magnesium combination tablets, as they are not well absorbed. Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In some cases, intramuscular or intravenous doses may be necessary." (page 28)