I was just recently diagnosed but only have bands 31 and 41, as well as an indeterminate for 39.
It started in September with pins and needles in my hands and feet, feeling faint, and my heart racing for four days straight. I thought I was having a stroke! I had these feelings before in the previous year but only on the 4 or 5 times... when I drank or did Botox😂
My regular pcp put me on two weeks of doxy and all hell broke loose... my fingers started twitching, then muscle cramps/weakness and extreme exhaustion. He took me off the doxy saying the cdc only recommends two weeks...(he’d only given it to me since I informed him I had picked many a tick off of myself and my dog this summer.)
Now I’m back on doxy after a 5 week break and I cannot tell if my symptoms are worsening or staying the same. I do know my anxiety is through the roof!!!!
Nights are the worst I had to start taking medication for sleep and anxiety. I believe it’s one for parkinsons patients.
Anyhow, I have an EMG scheduled in Feb as I did have some hyperintensities come up on an MRI. Has anyone else had Lyme show up in an MRI? So frightened right now! And I just want these tremors, muscle cramps, and arthritic pain to go away!!!! Does anyone else experience these symptoms? Especially the muscle burning?
Also has anyone had a low VEGG and C3 ? Does this indicate mold toxicity?
Posted by Keebler (Member # 12673) on :
- Andreading,
I'm moving another post of yours from that 10-year old thread to here for continuity ... so others can see all you have going on now for better replies - also adding more space breaks for easier reading:
Andreading also just posted:
. . . was freaking out about the low VEGF as the first thing that pops up when I googled is ALS.
I tested via Igenix: 31+ 39 I. 41 +++. I also have low C3a and borderline vitamin D and eos. Otherwise, my bloodwork looks great. But my neurological symptoms suck!!
It began with peripheral neuropathy and feeling faint with heart racing.
My heart pain and dizziness went away after two weeks of doxy. However, I had the worst head pressure at the base of my head, along with super sensitive hearing, over reactive reflexes, and sensitivity to light.
Then I started twitching and having tremors on the doxy in addition to my original peripheral neuropathy.
4 weeks went by, where I was terribly weak and the neuro symptoms began to worsen.
Then my llmd got the test back from igenix and put me back on doxy but 3 Times a day. The first week was so bad, I had to take an anti- anxiety. Two weeks into the doxy and one week on amitriptyline I feel a lot better.
Less twitching, tremors, and neuropathy. However, I still have lots of muscle cramping, burning, and joint pain at times. What’s frightening is it’s all primarily on the right side😬.
Has anyone had these symptoms??? I just would find comfort that others with lyme have had similar experiences.
I’m trying not to freak out! Part of me thinks the amitriptyline is masking everything. It’s not really helping with the anxiety, although I can sleep at night now which is amazing!
[end Andreading post 11-8-17] -
Posted by Keebler (Member # 12673) on :
- Everyone with lyme - well, just about everyone - has had what you describe in all detail and more.
Sorry you are experiencing all this and the turmoil.
If the only Rx that is to be on your protocol is doxycycline, you do not have a true LLMD. I may be jumping the gun a bit and
maybe that's just how they will start but be sure they are truly ILADS educated and have a full fledged combination / rotation protocol in mind.
Doxycyline does not address they cystic form of lyme.
Rather than amitriptyline, MAGNESIUM is far better and far safer to quiet anxiety for most with lyme.
amitriptyline can also make the hyperacusis far, far worse and is ototoxic. Hyperacusis is the over sensitive hearing.
Magnesium is also better for the over active reactions, sensitivity to light and muscle cramping, pain.
As for muscle burning, proper liver support is where you would start there, too. Every - or most - good LLMDs will know that.
Magnesium also the place to start for racing heart.
but also be sure to be assessed for other tick borne infections. avoid all food additives, espceially msg.
I'm just about out of steam. I'm going to post some links set but can't connect the dots or explain why right now.
I know all this must be making your head spine. Just take it one step at a time and use replies as your study guide to come back to - or copy & paste in your own study files.
Take care. -
Posted by Keebler (Member # 12673) on :
- I have to question the intelligence of any doctor who prescribed amitriptyline for you after you told them you have hyperacusis (sensitive hearing). It's not safe for you to be on this drug. It could damage your hearing in various ways.
Lyme, itself, can cause hyperacusis but amitriptyline can make it far, far worse. I know, it nearly destroyed me due to tinnitus and hyperacusis.
And since so many with lyme have hyperacusis, IMO, no one with lyme should be given amitriptyline as it's so very contraindicated.
amitriptyline is not going to address the cause of any symptom. And it can make some symptoms much worse in the long run.
And there are things that may help better and are safer - Magnesium for starters.
. . . Yes, Amitriptyline can be quite ototoxic to some people.
Most complaints I receive concern loud tinnitus from taking Amitriptyline, although some people have also reported problems with distorted hearing and hyperacusis.
If you notice any of these kinds of problems, it is quite possible that Amitriptyline is the culprit. . . .
The Shocking Truth About Prescription Drugs, Medications, Chemicals and Herbals That Can (and Do) Damage Our Ears
By Neil Bauman, Ph.D.
. . . detailed listings of the ear-damaging side effects of 877 drugs, 35 herbals and 148 chemicals (798 pages). -
Posted by Keebler (Member # 12673) on :
- To help you better tolerate treatment, I would hope your doctor would have you on some solid liver support. More detail:
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posted by Andreading (Member # 51004) on :
Keebler, you are so helpful!! My neurologist who’s actually a PA prescribed the amitriptyline. My llmd okayed it as she knew I was not sleeping. (Even with melatonin and magnesium)
My LLMD has me taking Magnesium, a multi, Itires(for lymph support), apo-HePAT (for liver support), the doxy, And I start Samento tom. I’ll be on it for the next 6 weeks and then we meet to reevaluate. What’s the typical protocol for beginning treatment?
Posted by Andreading (Member # 51004) on :
Oh also probiotic and omega 3
Posted by Keebler (Member # 12673) on :
- A neurologist who is also a PA? They are either one or the other. A PA is a physician's assistant, somewhere between a nurse and a doctor.
A neurologist has training far beyond that of a MD.
Still, I don't care if Santa Clause prescribed it, as you say you have hyperacusis,
Amitriptyline is not right & not safe - for you to be taking, no matter if it helps with sleep or not. I know it's sounds like I'm over the top, but hyperacusis could be the end of you if you are not very careful to avoid all ototoxic agents that are not absolutely necessary.
And it is not. There are safer things to help with sleep. Please. Do not let your ears get to the point where they are so sensitive life as you know it could be over regarding sounds you may be able to tolerate. I'm there and it's a terrible place to be. I don't want anyone else to ruin their hearing in this way.
. . . Yes, Amitriptyline can be quite ototoxic to some people.
Most complaints I receive concern loud tinnitus from taking Amitriptyline, although some people have also reported problems with distorted hearing and hyperacusis.
If you notice any of these kinds of problems, it is quite possible that Amitriptyline is the culprit. . . . -
Posted by Keebler (Member # 12673) on :
- Be sure to read through the Tinnitus thread for detail about ototoxicity. Note: hyperacusis &/or tinnitus - well, they are not side effects, per se. They are much more serious reactions.
Either / both, or any kinds of balance or vertigo issues are often rather a sign of damage (and that may or may not be reversible).
See the notes in that thread about key sound protective measures. This may be the most important aspect of treatment as it must be in place BEFORE treatment really begins.
Protecting your entire vestibular system, and where there is already compromise, taking all precautions to avoid it worsening and offering some chance of reversal. Good luck & take care. -
Posted by wrotek (Member # 5354) on :
What do You mean VEGF ? Is it Vascular Endothelial Growth Factor ? Who tests is and what for ?