I am unsure what to think of this symptom. I have been dealing with "whole body" throbbing sensations for about the last 3 weeks. It feels as if my body is throbbing along with my heartbeat. But yesterday, it has now started in my head, neck and face as well. My head is not achy or hurting like a headache, but I feel somewhat light-headed.
I am currently only treating for the Protomyxzoa Rheumatica with 50 MG of Doxy daily along with the low fat diet. The Naturo-path had me on a liver detox and N.A.C as well as Charcoal. I had stopped everything a few days ago because my face was swelling. In the mean time, this throbbing continues in my body and now the head, neck and face.
Has anyone had anything like this? It is really making me nervous and honestly I am feeling rather scared at this point.
Posted by Lymetoo (Member # 743) on :
OUCH!! Maybe you have a very heavy bacterial load?
Posted by Winni (Member # 36772) on :
I am not sure, but I am really nervous about this. My LLND asked me to keep taking the NAC and also sulfur C 6. she thinks this may help. I will give it a try but I am also going to the Cardiologist tomorrow as a part of this seems to be PVC's (premature ventricular contractions) not always, but sometimes.
If I could put my finger on someone else that had been through this, I wouldn't be so darn scared. Posted by dbpei (Member # 33574) on :
Winni, I have had ongoing throbbing/vibrating sensations since Lyme came out of dormancy in my body. This was one of the first symptoms that made me realize that something was definitely going on in my body that the dotors couldn't figure out.
It does go along with lyme disease that has invaded your nervous system for some people. I have done a lot of research on it and there are some lyme patients who experience this sensation.
I have throbbing or pulsating feelings that are usually in my hands, feet and head, but at times it can affect other body parts. I read one woman describe it as though a jack hammer is running a few feet away from her.
I also tested positive for anaplasmosis and rocky mountain spotted fever. I was found to have high mercury and arsenic levels as well. These can all play a part.
I have been very dizzy and having some spells of feeling like I could faint. My PCP just had me wear a heart halter monitor for a day recently and I am awaiting the results.
Keep in touch and feel free to PM me. Take good care.
Posted by glm1111 (Member # 16556) on :
Have you been dx with Lyme & co? If so 50 mg of doxy is a VERY low dose to tx Lyme. The standard is 200mg 2 x a day.
Also consider addng Ivermectin or antiparasitic herbs. Parasites/worms play a MAJOR role in Lyme disease.
Have had ALL the symptoms you mention above, and the only thing that turned the corner for me was going after parasites.
If your ND is not familiar with treating for parasites, I would find one that does ASAP. Google parasite symptoms and the symptom list at Humaworm.
Gael
Posted by Winni (Member # 36772) on :
Thank you, I will talk to her about the parasites. I am really just getting into this whole thing. First I was DX with the Protomyxzoa Rheumatica (FL1953) and that treatment was low dose antibiotics and low fat diet. Tried this but couldnt get any results on a westernblot. Well i just got a positive yesterday. Finally band 41 and 39 showing positive. So now we can ramp it up. I wanted to anyway but was told my immune system was too low and needed detox so we have been working on this and I think that is why i finally got a positive on a Western Blot. I was so glad to know I am not crazy and these things are real. I have another visit next week and I will see where we head from here. I know I am in for it as far as treatment goes. I am just glad to finally be making progress. I was supposed to be on 200 mg of Doxy but i could not tolerate it, thus the need to detox. I am also in need of Heavy metal detox and slowly working on this.
Thanks so much for your thoughts, this helps me with my future appointment.
Take Care,
Winni
Posted by dbpei (Member # 33574) on :
Interesting, Winni. I tested positive on 18, 41 and 39 was indeterminate. Those vibrating symptoms are scary. I also tested positive for mercury and arsenic toxicity on one blood test.
I often have wondered if the vibrations were related more to the heavy metals than the lyme. Next month, I am going to a lyme literate kinesiologist who will test me for parasites and help me chelate the heavy metals.
I will post something if I notice an improvement after being treated for either.
Posted by atheana58 (Member # 33429) on :
I have the same feeling. IN my head and also in my ears. No rhyme or reason. Hang in there!
Posted by Winni (Member # 36772) on :
Hi Guys, I wanted to update on my original post. My symptoms greatly subsided about June 20th. I have no idea why and i hadn't done anything differently except increased my doxy to 100mg. About 2 weeks ago they started all over. The intense throbbing is back. Which means there were about 6 weeks with the throbbing, then a decrease for aproximately 6 weeks and now throbbing again. Can anyone potentially shed some light as to why this is happening? Flare? Herx of some sort? I am not sure what to think? Thoughts? Thanks
Posted by Lymetoo (Member # 743) on :
Could be your monthly herxing. It's usually every 3-5 wks.
Posted by SickLYme (Member # 34104) on :
Weird thing...I have also been having this recently. My doc just switch me to suphur 200c. The throbbing and pressure is so bad in my head. I just put a call into her today to see what she wants to do. However it's strange because you are also on Sulphur.
Posted by dbpei (Member # 33574) on :
Sulphur is a binder - hmmm... sounds like it could be somehow related to heavy metals. I would ask your MD if it could be metal toxicity that is causing some of these symptoms. By the way, I just did the DMSA urine test and do not have the results yet.
Posted by Tammy N. (Member # 26835) on :
Parasites don't like sulphur. They could be reacting to that.
Posted by Lymetoo (Member # 743) on :
Sulfa or sulphur??
Why are you taking sulphur?
Posted by Winni (Member # 36772) on :
@ SickLyme, since we have the same Dr. I thought I would let you know i too put a call into her and she has me off everything.. DETOX DETOX DETOX! Will be adding meds again next week, one at a time. And honestly, I owe you an email. Sorry, life has gotten away from me. The move is over and we are finally settled. Hope you are doing well. Will email you soon. Take Care.
Posted by minimonkey (Member # 8693) on :
YES to the throbbing (as well as "vibrating" and tingling sensations all over) -- I get it head to toe, along with my heart rhythm, when I am inflamed. (I am having it right now, actually -- currently in a relapse after almost three years total remission.)
It gets incrementally worse as I herx.
My llmds haven't been too unduly concerned unless I start getting meningitis/encephalitis symptoms (I was really prone to that when I was at my most sick) -- otherwise, it is rest, and antiinflammatory supplements and systemic enzymes (I like the zyflammend, too!) NSAIDS tend to make it worse, I've found -- and tend to cause further water retention on top of the mounds of it that I already have from the flare.
If it gets too intense, pulsing back from treatment for a day or two and detoxing as much as possible has worked for me -- it makes it less intense.
Hope you feel better soon!
Posted by minimonkey (Member # 8693) on :
By sulpher, are you referring to the N.A.C.?
Posted by Winni (Member # 36772) on :
In My case it is called Sulfur 6C and then upped the dosage to Sulfur 30 C. It is a homeopathic remedy and can be beneficial for many uses.
Posted by Winni (Member # 36772) on :
@minimonkey, I am so sad that you are no longer in remission. 3 years is a long time. It sounds like you have a good handle on what is causing symptoms.. I do not really yet. I am getting there but each time, it really makes me nervous and i panic when it comes back. For me, I am trying to see if this gets worse with my monthly cycle. I will let you know in a week or so...
Thanks for replying, at least I know I am not absolutely nuts... just a little LOL!
Posted by Messa (Member # 38065) on :
I have the exact same symptoms. They are very scarey! The throbbing and pulsing go along with my heartbeat. Or so it seems. I also have tremors with it.
It can get so intense that I just lie there praying I won't pass out!
Hang in there! You aren't alone.
Oh and the throbbing, pulsing and vibrating comes and goes for me as well. I was fine for almost a month and then bam! I'm also trying to figure out if it's worse around my monthly.
Posted by minimonkey (Member # 8693) on :
Messa --
Yes, hormonal cycles often exacerbate symptoms. Most women find their symptoms are worse before or during menstruaton.
The throbbing is inflammation -- think of when you have a bad bruise, and it throbs with your heartbeat-- this is essentially the same thing, but the inflammation is body wide. The vibrating and such are also inflammation, but within the central and peripheral nervous systems -- often the meninges or the spinal column (tremors can be caused by this, too).
I know it feels awful -- and the vibrating can make you feel like someone crossed your wires with a toaster, or plugged you into an electrical socket -- but neither of my docs has thought it to be terribly dangerous unless it does go into true meningitis/encephalitis.
I've lived with this disease for a long time (since 1988, at least), and I am hopeful that I can get it back in remission sooner rather than later. I know it is possible to come back from the brink ... I've done it three times, and each relapse has been shorter lived and easier to treat.
Posted by Winni (Member # 36772) on :
Thank you all, you have provided me with some comfort and understanding of what is going on. I am sickened that you are experiencing this and it appears that it is nothing new. Somehow, we will get through it and be better for it however sometimes I give in to my fear and that is normally when i turn to you all. You are all a blessing in my life and give me so much hope. Hugs to you all.
Posted by SickLYme (Member # 34104) on :
Sulphur 200C. It is a homeopathic remedy. In addition I am also on N.A.C amongst other things.
Winni, Dr. H. had me quit taking meds for five days. Did detox with charcoal and epsom salt baths. I was herxing bad, and now am starting to feel much better. Will start adding things back in. I will take all of this as a good sign. Super excited to get labs redrawn next month!
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