What are your symptoms?...
Hi embracelife, Your symptoms sound a lot like what I went through. I really did have an ALS scare, with that even as a suggested diagnosis. Given the medical advice you have received, I think you...
Thanks guys. In short, since starting with Dr. M I have treated with Clarithomycin 250 mg 4 Times a day. We also use Allicin as well as Some natural supplements to boost the immune system. As I said,...
Thanks. Yeah since day one. Digesta Guard and Primal Defense. Every day twice a day....
Hello again after a long time away. I posted at the end of 2019 and early 2020 about neurological Lyme issues mimicking ALS. I then posted at the end of March explaining my dramatic progress treating...
I just wanted to update this post with some good news. I have improved dramatically over the past 2 months. To those struggling with this disease and in a dark spot, there is hope. My decline halted...
The other new thing that is weirding me out is my feet and hands have been getting super cold and difficult to warm up. Not always but daily now for about a week. Anyone else had this?...
After a brief respite off the antimicrobals, I started the Babesia meds. Do not feel well these past few days. I don’t know if it’s a herx or just all round deterioration. I’m going to see a new LLMD...
Thanks babs, ive been doing the sauna pretty much daily for 3 months now. How do you discover this mutation? I’ve often wondered if I have detox issues....
Thanks Girlie. I have no heart issues that I’m aware of. Frightening though. Lord I don’t know what to do....
Should I stop the B vitamins? Or is that okay?...
Flowergarden, the air hunger just started two weeks ago and pops up at night occasionally. It’s not as bad as being suffocated but it’s frightening enough. I haven’t treated Babesia yet and the LLMD...
I don’t know what long QT is??? The only thing I started was a new Vitamin B complex. It is such a dramatic setback after a good stretch very disheartening. I really haven’t noticed much helping the...
As soon as I write that I was setting myself up. Last night woke up with pain all on my right side, from the mouth to the hands to legs, alternating from freezing cold (confirmed by fiancé) to...
Also, generally twitching body wide is greatly reduced. Not gone but reduced. Still twitching in thumbs and fingers but even these are a bit better. Still feel super weird....
Update...Well I’ve been off the anti-microbals for over a week now and generally feel a fair bit better. Some of the most disturbing and painful symptoms have eased slightly. LLMD did prescribe...
THE MISSING LLMD HAS RETURNED!!! Just heard from my LLMD. No explanation. She wants to prescribe me Azithromycin and atovaquone for babesia. And something for sleep. Last time we spoke we didn’t...
I’m stopping the activated charcoal for now. It’s the only thing I can think of causing my stool to become pale and greenish. It’s the only ingesting change I’ve made, everything else has been...
Thank you walkingbyfaith. I have no intention of disposing of anything paid WAY too much for everything. Dcd, thanks. I assure you it’s all true sadly. I still worry about ALS, it’s so hard not to...
Thanks Sara, I started Charcoal 3 days ago, so I guess I’m on a binder without knowing it. Taking it at night away from everything. Hopefully it will provide some relief....
Well I hope these symptoms are mold and not ALS. It’s just so terribly frightening to have the neurological symptoms and weird stuff in your hands and feet. Again, literally aside from the twitching...
Isitlyme, thanks. Yes I am concerned the LLMD is stringing out appointments more than following CDC guidelines. She is the one who put me on all the antimicrobals which everyone on the board thought...
After a good night yesterday. Tonight, severe pain in my hands, difficulty using index finger, tightness in my calf twitching in legs and pressure at the tops of my feet. Super detox day...ASG,...
Really? That’s interesting. My (missing) LLMD prescribes both at the same time? I have been on biocidin since 11/15. No idea that could have been complicating matters for me. Today is D-Day plus...
Thank you everyone for your help. The consensus seems to be that I’m overdoing the antimicrobals. I’m stopping the antibiotics and herbs for now. I’m keeping the detox regimen and most of the...
Air hunger again tonight. Took no new meds or Pinella. What is going on here?!!...
Thanks for the input everyone. As I say, I’m groping my way to a solution given I’m on my own here. The symptoms (pain, twitching weakness) becoming focused on my thumbs and hands (my most disabling)...
Thank you. My morale hasn’t never been lower in my life. Today is the worst day in awhile for all over aches and pains in addition to the usual hand and foot weakness and twitching. Tongue is back to...
Thanks Sara and walking by faith. The air hunger lasted about two hours and went away but it definitely was very real. I never really felt like I was not going to be able to breathe at all but it...
Started Pinella for detox today. Having air hunger tonight. I have never had this symptom before tonight. I never even knew what it meant when people said that. But tonight I cannot catch a deep...
Blood work in September indicated my virus load was quite high. Been on Valtrex since November along with everything else. Again, got the sense my LLMD was just throwing hings at the wall and seeing...
Thanks saraeli. I think I would have gone mad a long time ago without the forum. I’m in the USA so now medical leave or insurance if I’m not working. Go figure. I used to work fighting to get people...
Thanks. I will try some of that orbiting. I’m trying to keep a handle on things moment to moment but I’m not sure I can work much longer. I’m working from home but even that is too much for me. That...
Awoke today with finger and thumb twitching. Terrible sore arms and, a new one, neck twitching. Having a full blown anxiety attack. I’m not sure how much longer I can do this....
Thanks Ganglion Cyster. I really appreciate it. I’m dropping the A-Bart and see if it helps. I really think I need the IV Rocephon, should have hand it before. Alas, trying to get a doctor to give it...
So...had severe pain all over last night. But tongue is back. Now my hands and feet are twitching. It just never ends... Trying to stay hopeful but......
Tongue is now so sore I cannot speak......
Yes Girlie 100%. That’s why I’m trying to hit this thing hard now. I’m just very afraid....
And this morning I have pain in the top of both my feet in the same spot!!! And the feet are twitching, which is new. Right knee is now sore. Getting harder to even hold the phone to type this. I’m...
Thank you for everything everyone. I started treating with doxycycline 4 weeks after exposure but that was it until mid- November when I added everything else. I’m so confused. I’m afraid my Lyme has...
I agree Girlie! They are terrifying but consistent with what others have reported. She just seems baffled that supplements and cutting back haven't resolved everything. Everything began in July 21...
orbitingaround..Yes it is a lot! But I'm just following advice.Initially LLMD suggested cutting back and so I have. 6 drops of A-Bart down from 12 and halved the abx. No improvements. Additionally,...
Thank you all. I’m fighting. I’m engaged to the most wonderful woman in the world and want to make it to the wedding. My LLMD was initially helpful. I started on Rifampin plus doxycycline 6 weeks ago...
Neurological Lyme. I really feel like I’m dying. Severe nerve pain, thumbs and index finger painful and not fully working, muscles sore right and spasms, twitches. Sore tongue and throat. Not sure...
I suppose I should also be grateful that "worst case scenario" is generally painless because, boy do I have pain moving all around my body like a whack a mole. LOL....
Thanks everyone. It is sometimes difficult to know what is real and what is imaginary. I think having gone through this for such a period of time now I’m just mentally exhausted which exacerbates any...
Hi everyone. I'm having some serious panic attacks and anxiety over my ongoing twitching. (I have a previous PTSD diagnosis.) To recap, I had visual exposure to multiple ticks on 6/30, swollen elbow...
Thanks WalkByFaith. This is all new to me. Some days I feel almost normal and other days I'm bedridden. Moreover, the psychological strain is beginning to take its toll....
Thanks. The consenus does seem to be that a positive on the 41 band means *something.* Has anyone else had low on VEGF factor and high (over 7000) on TGF-b1. That seems somewhat suggestive of mold...
Frankly, Dr. Google is giving me some terrifying information regarding low on VEGF and high TGF-b1 numbers....