LymeNet Flash: Cannot find anyone else with this symptom- HELP please

This is topic Cannot find anyone else with this symptom- HELP please in forum Medical Questions at LymeNet Flash.

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Posted by Winni (Member # 36772) on :

Hi! I have searched everywhere and come up empty handed. If there is anyone out there that has a suggestion Please please please let me know.

I am DX with Lyme,FL1953 and have high Myco IGG numbers that are rising.

My tests are negative for Bart and Babs. I have borderline numbers for HHV-6.

I just had an MRI and MRA of my neck and brain and nothing there.

Also just had a ct scan of my stomach and it was clear also.

I am having this extreme body throbbing from the waist up, mostly when i am sitting or just waking up in the morning. It is there when i am active, just not as noticable. It started around April-May intermittantly and now is constant. It started in my stomach and they thought maybe i had an arotic anurisym (sp) and that was negative. It radiates up into my chest, arms, back and neck. Not in my head.

It doesnt seem to matter what i do, take or don't take it will not stop.

My doc has me off my Doxy (all I could handle at this time) and detoxing. I am using Pekana detox 2 times daily, lemon water and eating low fat.

I have taken xanax and it relieves the anxiety that the throbbing gives me but not the throbbing.

What can i do, where do i turn, please any suggestions.. i really need help.

I follow up with my neurologist in 2 weeks, but she is clueless also. and also does not believe in Lyme (go figure).

I cannot take magnesium due to the FL1953 but feel i should try it to see if it makes a difference. I am not sure if I am deficient or not, I do not have any cramping pains.

I am scared as heck right now and really am questioning everything.. am i getting worse? Should i do aggressive treatment anyway instead of slow and steady and just buck up understanding I may be bedridden at some point? I cannot come up with an answer.

Thanks for taking the time to read this.. I am going to also post on another board so if you see it again, just know I am trying to reach as many folks as i can.

Posted by pooldog71 (Member # 21722) on :

Winni

Could you explain the symptom a little more?

I get what I call a body vibration. I am not sure if this is the same thing. The vibration does not cause pain, but is bothersome.

When I first noticed this it really freaked me out. Luckily other people here explained that they also have this and it apparently is not uncommon with Lyme.

At times in has increased and decreased, almost like an ebb and flow. I have felt that somehow it is related to anxiety or that increased anxiety increases the vibration.

Posted by Winni (Member # 36772) on :

HI Pooldog, I also get the internal vibrations or tremors at times and have noticed they come and go, but this is very different. It is almost as if each time my heart beats I can feel it throughout my entire upper body. Like a pulsating feeling. Hope this is not what you have experienced. [Smile]

Posted by Pocono Lyme (Member # 5939) on :

How about a MRA of abdomen and maybe chest too?
If it originates in your abdomen that's where I'd start.

It would make you think it may be vascular in nature.
With Lyme and company though, any symptom is possible without an explanation.

I've had many really strange, frightening symptoms but have to say this one missed me. I better shut up. [bonk]

Posted by Winni (Member # 36772) on :

You are too funny! I read some posts and beg God not to let that particular symptom hit me! I totally understand. Thanks for the suggestion, that makes sense. I follow up with the neurologist in 2 weeks and will see what she can do to help. She wanted me to take an rx. for high blood pressure that may help with he throbbing, but I don't have high blood pressure. So frustrating. The side effects were horrifying and had alot of drug interactions. I said no way!

Posted by Keebler (Member # 12673) on :

-
Unless that neurologist is LL, don't expect much. And don't take ANYTHING without FIRST talking about it with your LLMD.
-

Posted by glm1111 (Member # 16556) on :

Have you looked into treating parasites/worms? They can play a MAJOR part in Lyme and is often an overlooked co-infection even by the best LLMDs. Internal vibrations can definitely be one of the symptoms.

I had them for yrs until I discovered I was loaded with parasites. Check out www.lymephotos.com This is what came out of me after 6 mos of LOTS of antiparasitic herbs and salt/c.

Parasites hibernate in the small intestine and could be a reason that you are feeling throbbing from the waist up. Google parasite symptoms and research all you can about parasites.

Gael

Posted by Lymetoo (Member # 743) on :

Moving to Medical Questions for more help.

Posted by tickled1 (Member # 14257) on :

Could you have LOW blood pressure? I wonder if this is a POTS symptom.

Posted by dbpei (Member # 33574) on :

I recently attended a CEU event by a well known lyme MD and researcher. He said that since chronic lyme disease is a disease of the nervous system, it changes the way our nerves work.

He said that your nerves are the most affected and when he hears of patients having strange 'vibration type feelings', he immediately thinks of chronic lyme. Because it travels to so many different organs and body parts, it can affect everyone differently.

I have been plagued with vibrating, pulsating sensations in different body parts that have come and gone. I feel them every night in my head, though, when things are still and quiet. I have communicated with some who have gotten better and no longer suffer from this vibrating sensation.

There is hope! I think we just have to give it time and keep on treating.

Posted by nefferdun (Member # 20157) on :

It could be the FL1953 affecting your nerves. Obviously it does this as it causes MS and ALS. Have you tried ivermectin/stromectol? I had some kind of strange nerve pain in one of my ankles and it went away with the stromectol. I would not take magnesium.

Posted by Winni (Member # 36772) on :

Thank you all for taking time to read my post. I am considering the parasite protocol but need to talk with my LLMD about this for long term. If he is not interested, I think I will need another LLMD. It is so sad this disease scares us to the point of feeling mentally unstable. There is hope, I will hang I there and get through this, thank you for the support!