Insane lightheaded, off balance and weak legs.

Hi everyone!!

What is this? I started herbs in the summer and have been at my worst ever since.
I stopped them weeks ago and I’m still in very bad shape. I was much better before starting them.
I’m sure if it was abx it would be no different.
I am shaky, off balance, lightheaded, some nausea, weak in my legs, my upper arms feel achy into my shoulders and back. Head pressure and head tingling which I had for years. That’s not new. Walking is extremely difficult.
It’s taking my breath away when I walk due to to effort it takes. Plus no appetite which has never happened.
I’ve been ill for years. Treated off and on. Had times of feeling ok. I managed. I walked everyday, I had a job, cooked, cleaned, shopped, vacationed, had a pretty big social life.
I have no life now all of a sudden.

Hi, aphysicalwreck. Sorry to see you have not received any replies.

As for your question of what is going on, the answer could be so many things - herxing, toxin overload slowing down your liver, a post-viral inflammatory response, extra stress causing dysfunction that snowballs, mold exposure, an allergy to one of the herbs you have been using, mast cell activation syndrome?

Personally, I never feel good (or even okay) when I am using antimicrobial treatment. Not at all. It takes me weeks or months to recover from herxes. This is not typical, but it is my experience.

Obviously I know very little about your situation, but your description sounds like you are overloaded and inflamed. When you have no appetite, sometimes it means your body is just out of energy (and digestion takes a lot of energy). Focus on liquids and electrolytes, and pare down your supplements to as few as you can manage. Avoid sugar and other inflammatory foods and drinks. Let yourself be still and genuinely rest for a while. I know that sounds simplistic, but that might be the best thing right now.

It can be so hard not to be afraid when your body is rebelling and your life has changed so much. But this is temporary!

I have experienced many of your same symptoms during the course of this illness. I have yet to figure out how to get rid of them. I do know that doxy intensified all of my symptoms. IV Rocephin helped for awhile as did treating Babesia. I still struggle with balance, lightheadedness and difficulty walking some days. Some days I feel it is more arthritic in nature but none of my labs point to that. It is very frustrating.

aphysicalwreck said...
sdarrah
I cant believe you have been treating for two years and still have this issue. What treatment are you on?
How do you manage these symptoms? How do you function? I am almost bedridden because of this. This issue is very new to me. 4 weeks ago I was up and walking without a problem. I am not saying I felt good but I did not have an issue with walking. By and chance do you have nausea too?
I dont know where you live but someone just referred me to a dr in Connecticut. They are closed today but I am going to call them tomorrow to get info. Its close to 3 hours for me but If i can get better its worth it.
I will keep you posted.

**********
I am in NH and have been on many different protocols treating with a LLMD for Lyme, babs and bart - I had all the classic symptoms of all three and even lost hearing in left ear. I have gotten better from almost all symptoms except the off-balance when walking and slurred speech. It has halted my life. It took 18 months to get diagnosed and its been 2 yrs treating this month and I dont know if it is the Bart causing the balance and Dysarthria but I am currently on Doxy, Bactrim & Malerone and take many supplements Quercetin, Cucurmin, Glutithione, NAC, Vit c, probiotic and a few more. I dont know what else to do but keep hoping it will get better with more time. Its not mold.

Post Edited (sdarrah) : 10/26/2020 12:34:17 PM (GMT-6)

Sdarrah

That’s a long time to be on antibiotics. You must have stomach issues from it.

Did you ever go to an ENT or neurologist to see if there is another cause of the balance issue?

aphysicalwreck

I understand your fear of treating and feeling worse..that is always a risk we take.
The antibiotics certainly can create gut issues ..especially for someone like me who already deals with celiac disease.I watch my diet carefully and take probiotics when treating but eventually they take a toll on my gut.I have never tried the herbal route...a bit concerned how I may react to them.
So many of my symptoms mirror yours.
I saw several neurologists who had no explanation . We excluded MS, Parkinson’s,
Etc. Had many MRIs but refused a spinal tap. I have good days, bad days and VERY bad days. I have learned how to manage possibly because I am so used to these symptoms being a part of my life. I think we all struggle with your same question about getting better. I don’t have the answer to that but it is not a stupid question.

sdarrah said...
I also take nystatin and take a very good and expensive probiotic. I lost my hearing several months into lyme symptoms and but was sent to an ENT too late for them to save my hearing. I did every vestibular test there is the balance problem began many months prior to the hearing loss, I am really sure these symptoms are from Bartonella and hope to discuss with my llmd to change back to Rifampin and add oregano oil to the Doxy I am currently taking. I have had many on this forum say Neuro and Bart can take a long time to treat, which I hope is the case and just need to give it more time.

Also, I went to 3 neurologist and none of them even thought of lyme and I had a lumber puncture which resulted in no answers.

Losing your hearing must have scared you to death. Will it ever come back? So you can’t hear at all? I’m so sorry!!

I would take nystatin too if I end up on abx and of course a good probiotic. I take oregano oil. I think you can take that on your own without asking the dr.

saraeli said...
A couple of years ago, I got what I believe was a cold, and a week later the cold symptoms subsided and my body fell into to a cytokine storm. My proximal muscles (shoulders and upper thighs) were weak and sore, as though I had been exercising a lot. My partner had to help me bathe and walk to the bathroom. I had a constant sense of disequilibrium and weird proprioception. No appetite, and attempting to eat felt grotesque. Bad headaches, short of breath, Also developed peripheral neuropathy at this time, and my POTS flared severely. Any chance you caught a bug recently? Or had some other major body stressor?

During that time I was bedridden for five months. My PCP diagnosed me with a "post-viral syndrome" and recommended transfer factor and liposomal glutathione. My neurologist shrugged and offered pain meds. My LLMD thought that I had an adrenal crash and recommended adrenal glandular supplements and adaptogens. An ER doctor diagnosed me with post-viral myositis and told me it probably would go away eventually. After a few months, my PCP and LLMD agreed that I was experiencing an ongoing cytokine storm. In short, everyone was guessing, and no one knew anything. Or maybe it all was true.

This went on maddeningly for five months until I did the following (can't say for sure which one helped the most, since I did them all at once): 1. Realized I had MCAS after reading Neil Nathan's book Toxic and began to treat that (quercetin, curcumin) and eat a low-histamine diet, 2. had an irritating root canal-treated tooth extracted, and 3. started the DNRS limbic system retraining program. Within a month I was much, much better - about 85% of my pre-Lyme health.

Just thought I'd share this in case it rings any bells.

Thank you for sharing that.

My recent symptoms have not been activated by a situation. But my initial illness started the with an upper respiratory infection. I went on an antibiotic and recovered from that but was never the same since.

I thought I had cfs and the journey began.
I have some of the symptoms you are talking about plus more.
I have adrenal fatigue and have hypothyroidism too.
What is that DNRS all about.
How are you now? Did you actually treat Lyme?

Two things I feel have helped me a lot to have more good days and diminish my symptoms are supplementing with vitamin B12(I was very deficient) and magnesium.

Regarding balance and walking issues / light headedness - I have experienced this at different times. It was part of my initial onset of symptoms in 2009, that I believe was Lyme and/or coinfections. It gradually went away on its own.

It returned in a different fashion in 2015-2016 after an upper respiratory infection set off whole body dysfunction and inflammation. After finally getting to a knowledgeable doctor, I learned I was suffering from mold toxicity and tested positive for Lyme.

After moving and starting detox for mold, the balance issues got even worse at times. It is better now, and I don’t have too much issues anymore.

For those who have these symptoms long term, I would recommend you seriously consider the following:
- testing for mycotoxins
- trialing Cholestyramine (very potent toxin binder)
- look into other toxins like heavy metals if the first two have no effect

I was going to post on this but I'll drop this here...

I too have been having walking difficulty. For me it seems to be a proprioception issue that makes it hard to get from point a to point b where I have to concintrate hard.
I can't do stores / parks / outings unless I'm all lined up and that's not often lately.

It seems to coincide with my upper head / spine issues of pain in head and musculature down back, as well as tailbone/ hip... especially pain and discomfort in base of skull into head... I feel warmth in this area. Regularly sleep with ice pack . I used to run now I don't.

I shuffle acfoss floor.

I go to chiro and that used to help.
But this past year and especially five weeks it isnt helping the " misalignment/ stuck joint/ inflammation ...

I tried a neuro chiro but I was touched like a feather and got no relief. I only went twice but... when I'm out of wack I can't wait on it do I returned to a typical chiro. He says cervical vertebrae are markers of proprioception balance etc, he also says I may need to do MRI to see if any neuro involvement or deformity.

It used to be if I get the " right adjustment" aka. after a few tries I'd be good to go... sometimes just one adjustment. Now I'm going weekly...

I also recently have been getting the swaying as well.

So infections or just spine faulty, I suppose this is all due to infections. Is mine permenant. It not getting better.

I would like to try upper cervical chiro but none anywhere close. My nxt step( pun)
Is trying massage and trigger point. It sounds basic but I know I'm tight and I can't do anything work wise running around...

Not sure if this is the same type of balance issues your dealing with but I think mine is cervical spine related at least that's my latest revelation.

I too am afraid to treat. Or treating at moment....But hoping to start soon.

aphysicalwreck said...
Hi everyone!!

What is this? I started herbs in the summer and have been at my worst ever since.
I stopped them weeks ago and I’m still in very bad shape. I was much better before starting them.
I’m sure if it was abx it would be no different.
I am shaky, off balance, lightheaded, some nausea, weak in my legs, my upper arms feel achy into my shoulders and back. Head pressure and head tingling which I had for years. That’s not new. Walking is extremely difficult.
It’s taking my breath away when I walk due to to effort it takes. Plus no appetite which has never happened.
I’ve been ill for years. Treated off and on. Had times of feeling ok. I managed. I walked everyday, I had a job, cooked, cleaned, shopped, vacationed, had a pretty big social life.
I have no life now all of a sudden.

I have and have had every single symptom u mentioned . Especially the dizziness off balance low blood pressure when changing position (pots) weak legs which feels as if I'm walking jello if that makes sense. Only thing made me feel better was lots and lots of detox plus rest. Lots of TUDCA, l-ornirhine (helps remove amonia build up in brain which causes fatigue memory loss from lyme and bart etc. Epsom salt baths activated charcoal and chlorella. Detox is essential. I've tried japanese knot weed and red root bt it wasn't until I tried sida acuta that my migraines head pain neck and bone cracking subsided. Wt herbs have u tried so far?? My weakness is awful it's like walking on bones literally instead of lean meat and muscle mass. Feels as if I'm rather floating along than walking along it's awful. TUDCA should really help it's made a huge difference for me

aphysicalwreck said...
sdarrah
I cant believe you have been treating for two years and still have this issue. What treatment are you on?
How do you manage these symptoms? How do you function? I am almost bedridden because of this. This issue is very new to me. 4 weeks ago I was up and walking without a problem. I am not saying I felt good but I did not have an issue with walking. By and chance do you have nausea too?
I dont know where you live but someone just referred me to a dr in Connecticut. They are closed today but I am going to call them tomorrow to get info. Its close to 3 hours for me but If i can get better its worth it.
I will keep you posted.

glad I found this comment! I am in CT also do u think u can email me the doc who your going to see? I've also had weakness and nausea for years and this is before I realized it was lyme bart babesia rickettsia mold mcas etc. Tudca changed me a lot it actually did some good. Sida acuta brings out my biggest herx and it targets babesia and bartonella so that's wt I'm guessing has me bedridden all these years


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Post Edited By Moderator (Girlie) : 10/27/2020 12:12:56 PM (GMT-6)