Desperate need of help- mysterious "gravity" symptoms

Welcome New Member Check In
1

Hi, my name’s Katie and I’m actually posting on behalf of my friend Josh, because he’s too sick with Lyme to go on the computer and write. Josh is in a bad way. I believe he was diagnosed about a year and a half ago, and his life has become a living hell, although it wanes and waxes to a degree. We’re hoping to get some answers or at least hear some similar stories to what he’s experiencing, as no doctor has recognized some of his symptoms.

On top of the usual brain fog and I believe actual pain in his head, and raw nerve endings, Josh experiences something that he describes as the “gravity effect,” where he feels strongly that gravity or a heavy weight pulls on his body. Sadly, it’s at his worst when he either sits, lays down, or stands still, so he spends most of his time walking around his neighborhood and has to constantly move his feet. Standing still, sitting, or laying down is just too excruciating and overwhelming.

He’s started Oxygen treatments (is that what it’s called? Forgive me), but so far out of his four treatments, he only gets kind of a floaty feeling afterwards that lasts, but it doesn’t help with the gravity effect. This pulling-down is so strong that he wears a neck brace to keep his head up, and it hurts him a lot.

He’s been on intravenous antibiotics for a while with no effect, and keeps a religiously healthy diet. I’ve never seen him look more horrible. He is stick-thin and haggard and looks as ill as he seems to feel.

Josh is at his wit’s end, and if he wasn’t morally and for all other reasons opposed to it, he told me would think about ending his life. He also can’t sleep because of the gravity feeling, it’s so terribly uncomfortable to lie down, and is losing his mind over getting almost no rest.

Have any of you experienced anything even remotely resembling this gravity effect? The Lyme doctor and neurologist have never heard of such a thing. And if you or someone you know hasn’t experienced it but you know of an expert, can you please refer/recommend?

It is extremely difficult to see my friend suffering so badly, and I can’t even imagine what it’s like for him. Any help is deeply appreciated.

2

Hi Katie I’m not familiar with the gravity effect but am familiar with the dizziness and inability to walk. I’m not sure where you are located but in Foster city California there is a medical group that only treats Lyme disease in simple and the most complicated forms. It is called pacific frontier medical. And it is definitely worth looking into, the first visit has to be in office but the following 3 are over the phone. Best wishes for josh.

1 Like
3

@Katielee Katielee, the gravity effect you are talking about… Is this followed with severe neck stiffness as well as head and chest stiffness? When I experienced this, I felt like someone was pushing my head down into my body. I also had to wear a neck brace for the simple fact that my neck was so stiff and heavy all the time. Are there any other symptoms that he is experiencing right now? Has he been tested for Lyme and co infections? Has he tried other methods besides antibiotics and healthy eating? Where are you located?

I am no doctor but I do so much research and talk to so many people that have overcome the disease, people suffering for 20 plus years. I also have Lyme disease myself and have fought every single day of my life for a cure or way out. And that’s my mission, to help myself and others along the way. Do not give up on your friend, he is very lucky to have you in his life because this disease will make you hit rock bottom. It’ll make you think and imagine things your once healthy self good never even come up with.

So with that said, if you could respond with answering some of those questions it would make it much easier. The gravity feeling will eventually pass. I had so many symptoms and that along with the pain was the most annoying.

I do not recommend antibiotics, there’s proven research conducted in a rat that shows it did nothing to cure the disease, in fact it can’t even touch the parasite due to it’s techniques in hiding in the body. Antibiotics also ruin your gut and the gut is where 70 percent of our immune system lies. So when we destroy that and kill off all the bad and good bacteria, we deplete our immune system and prevent it from working. It also can create in inflammation.

I would try natural remedies, obviously healthy eating but that means an autoimmune diet. It means no carbs processed foods sugars alcohol fruit or dairy. organic apple cider vinegar is what I use as a natural antibiotic, it’s antiparasitic antiviral antibacterial. I also take many supplements, he needs to be tested for all of his vitamin levels and where it’s needed he must supplement to fill the deficiencies. Also if he has any gut issues diet will be very important. I have also used natural calm (magnesium citrate) to help with anxiety and giving my body what it needs. I also take bur bur detox which helps flush toxins. He can do clay to rid the toxins during die off. Pinella is also great for neuro brain symptoms. Getting a ton of sleep and taking care of self. Also he needs to be tested for molds,bacterial infections, and heavy metals. All these play a crucial role in recovery.

There’s so much info I can give you if you could respond with the answers to those questions i asked. Hang in there! He will get through this.

I hope to hear from you soon.

God bless you.

1 Like
4

Hi Katie and Josh,
I just wanted to send a quick reply in hopes it may help you.
When I first got sick with what ended up being Lyme (but took several years to diagnose) I felt like I had a terrible flu with profound fatigue (to the extent I had trouble walking). One of my original symptoms was that I felt like I was carrying around sandbags on my shoulders when upright or on top of my body when lying down. I attributed this time extreme fatigue - if over exerted myself I would get the sandbags feeling and felt like I couldn’t get up or hold myself upright. Not sure if this is the same as Josh is experiencing but it sounds similar. The sensation would get better with rest. I wonder if the movement Josh is doing is contributing to having the sensation even though it relieves symptoms… But rest is incredibly important with Lyme.
This feeling did go away with time as my health improved. Before I was diagnosed with Lyme, diet and supporting my immune system (and resring/knowing my limits) helped me a lot. Post diagnosis I have had a lot of success with Buhner herbs and am about 90% better. Antibiotics made me feel worse… Every responds differently to treatments which is frustrating but there are lots of options out there. Unfortunately it’s still bit of trial and error.
If you take a look at some of my other posts if you click my name, I’ve described my treatment path a bit more - maybe it will give you some ideas.
Feel free to reach out with any questions!
Best of luck!! Josh is lucky to have someone like you to help advocate for him. It can get better.
Sarah

5

Hey Katie, I’m sorry Josh is having such a traumatic experience. I have also had something like this happen to me occasionally, perhaps; extreme feeling of weight on my person. I have had lymes for 26 years, ehrlichiosis, and rocky mountain, so my symptoms are very difficult for doctors. basically i’ve learned to live with them; except maybe the anxiety, which plagues me constantly. i can’t offer treatment advice for Josh, but I do tell people with these kinds of symptoms that they need to spend more effort energizing their will, shifting their perspective, and supporting their emotional health. when i have a “flare up”, twice a year usually, i get the fatigue and arthritis which brings on the gravity feeling. it may very well be psychosomatic, and could be so in your friends case. support him by trying to feed positivity into him. the despair comes from living in a society that teaches us that there are solutions to any problem, especially medical ones. he has to step outside the paradigm and embrace the fact that he is alive, and he can change his outlook. that’s probably about all he can change, however emotional/ joint supplements may help. medicine likely won’t help him. best of luck.

6

I have no idea if you will come back to this to check, and honestly houses description helped me put my finger on it. I used to live with a chiropractor, so I had this and know what can help. Ideally, you need a chiropractor that can properly set ur Atlas*(do NOT TRY at home, extremely dangerous). Realistically though, something that can SAFELY!!! be done in ur home on a daily basis by just about anyone willing is something called decompression. I currently have my boyfriend every time I wake up/remember lol do this. — The individual performing simply needs to place themselves higher than Josh or whomever while him sitting straight up in a chair or wherever. Place hands wherever is most comfortable for both; ie 1.) verticle on both ears with thumbs RESTING at the bottom of the occipital lobe where it hits the top of neck/ OR 2.) One hand under the jaw cupped sideways, with the other placed at the occipital meets base. * This is important - try to pull directly straight up with as little angle as possible( otherwise it may do damage, but hey ur already screwed so what the he’ll lol. Go slowly, but with enough force to raise the head. Patient should feel an actual release well mine goes almost every time. Continue pulling upwards a bit past this, not much if u can feel it, and hold for anywhere from five to 20 seconds, whatever is comfortable for person getting worked on. Have them either tap u, or say (If can speak while performing) when they feel “done” or start getting light headed.

7

Ps, not all in fact many chiropractors have a difficult time setting Atlases!!! And can leave u in more pain.

8

Hi, thank you so very much for your thoughtful response-- I’m sorry I haven’t responded sooner. I read your response to Josh tonight and he says, “You are my savior!” and is actually quite desperate to get in touch with you if at all possible. He says he can’t take it one more day and at this point prays for death in all honesty sadly.

To answer your qu’s:
-yes, chest and neck stiffness, especially chest, and a lot of pain there
-other symptoms: can’t take on too much light, can’t eat anything without it setting off reaction and gravity pull gets worse, can’t sleep (laying down and sitting make it worse so he walks 17 hours a day), sharp pain in head, strong ringing in ears half the time
-yes, he’s been tested for lyme and all the co-infections and has all the co-infections. Vorellia (forgive me if spelling incorrect), parasite, microplasma, dadizia, fungus in his gut
-treatnents he’s done other than antibiotics: holistic antimicrobial and detox (made it worse), ozone treatment (didn’t work), takes “way too much” gabamax (helps a little with gravity pull)

Josh wants to know if there’s any way if you could get in touch with him (or me ■■■■) right away, I’m sorry to ask and know that there’s safety in discussing this in a forum, but Josh has only gotten worse and worse and is currently on the phone with me begging me to express just how bad this is. Josh asks if you could please call or text him at 917-■■■■. He and I totally understand if that is too much to ask, but Josh can’t take it anymore and knowing that he may hear from someone knowledgeable and with ample personal experience is helping him hold on. We will be thrilled to hear from you soon here, too.

Thank you so much, you have really given hope to a very sick person and we are so grateful.

9

Hi Sarah,

Josh is so relieved to hear that he is not alone with the “gravity pull”-- we are wondering if you could say a bit more about the Buhner herbs- is there a brand that’s best? A dose? A doctor or herbalist that referred you to them? Do you have any other recommendations? Did this help with the “sandbag” feeling directly or at once?

Thank you so much, we’re very glad to be getting some answers, finally.

10

Hi, so sorry for the delayed reply - I don’t check in here that often.
I followed a modified Buhner protocol - there is a book called Healing Lyme by Stephen Buhner and there is also a website buhnerhealinglyme.com that has some good starter info. The main herbs are Japanses Knotweed, Cats Claw and Elutherococus.
You can experiment on your own if money is an issue, however, it would be a good idea to work with an herbalist familiar with Lyme (potentially Buhner protocol if it resonates with you - there are others out there too like Cowden) if you go down this route so they can help you tailor the protocol to your needs and deal with die off.
Tommy Priester is an herbalist in Lincoln MA that I worked with for over a year and cured my Lyme. Herbs are not an immediate cure (nothing is!) but for me they were as effective as pharmaceuticals. I think he does Skype calls.
As for the sandbag feeling - I always got that after over-exerting myself. So, pay attention to when that feeling comes, and look at what Josh was doing beforehand - a little daily diary can be helpful. The main takeaway is learning to pace himself and not over-do it - know his limits. This is really hard to do, but listening to your body is really important with Lyme!

Best of luck!