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Very scared. Losing the use of the left side of my body.

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Posted 9/18/2014 3:11 PM (GMT 0)
Hello,

So this started with a general numbness in my left foot a few weeks ago. Now my entire lefy arm and leg either hurt, are numb or tingle all the time. In the process they have both become very weak. At this current rate I won't be able to use either of them soon. I am at a complete loss as to what to do. My doc didn't really ahve any answers. So I am now trying to find my 5th neurologist. But I think what can he really do for me anyway? I'm doing my Lyme protocol. Maybe it is aggrevating an autoimmune issue? Who knows? No one. Not one doc has been able to help me. All the while I keep getting worse and losing functionality. So what happens after I can't use my left side? I already feel it moving in to my right. Am I destined to end up parilized. Uggg. I'm over this nonsense.

Posted 9/18/2014 5:15 PM (GMT 0)
I'm sorry for what you are going through. I'm not sure if you are religious but prayer certainly helped me. At my worst I consulted with a priest and asked them to pray for me. I was loosing so much weight it was getting dangerous. My doctor was stumped. Nothing and I mean nothing would put weight on. I started to gain right after seeing my priest and the doctor doesn't have an explanation for the turnaround.

Now, I have other problems too. After a spinal tap to check for lyme I lost all the feelings in both legs, my hands went paralyzed and I had severe neck tremors. Of course my docs didn't have an answer and said all this wasn't possible. My very first symptom was facial paralysis/bells palsy.

Given that my doctors threw me to the wolves this is what I did,

Had my house checked for environmental toxins. I had a serious mold problem. I remediated and then rechecked to make sure the mold was gone. I got rid of everything in my room, because mold was there.

I started serious detox work. Like I threw away all cleaning chemicals, detergents, makeup..everything. I replaced it with organic, chemical free stuff. Everything I put on my skin is now non toxic.

I do Epsom salt baths a fee Times a week and soak my feet in a clay bath. I eat about 50percent organic. I'm working on this.

I'm getting my mercury filling out. I've read they can cause MS like symptoms. And then I will detox heavy metals naturally.

I had about two months of lyme treatment and had to stop because I couldn't tolerate any meds.

I can't even tell you how bad I was and all I'm doing is detoxing and I feel much better. I will do lyme treatment again at some point but I have to get strong enough.

I can drive again, walk for miles each morning and symptoms have been reduced but I'm not totally well yet.
Posted 9/18/2014 5:23 PM (GMT 0)
Akkami what is your Lyme protocol? It may not be addressing the infections you might have that the LLMD may not have been able to find.
Posted 9/18/2014 5:25 PM (GMT 0)
Akkami - So sorry you are going through that! I was quite scared for a few months last year...I got weak in both legs, tremors, and this was after my upper left side was weak, and sore. But some of it resolved before I started lyme treatment. Sometimes there aren't any answers, but you can still get better...and not know why. Don't give up, keep fighting...and saying positive things...keep telling yourself that you are healing...it will get better...
I can't remember - are you seeing a LL Dr.? Is that the Doc that didn't have any answers?
Posted 9/18/2014 6:28 PM (GMT 0)
Thanks everyone. I am taking Dr. Zhang's Chinese herbs because I know someone who had a lot of success with them for their Lyme. I spoke with him and the protocol is designed to treat my Lyme, Mycoplasma and possible Bartonella. Supposedly the herbs are better at fighting these things because their low molecular weight better allows them to penetrate the blood brain barrier. So I am working with the herbs doc and my regular LLMD. My regular LLMD doesn't have anything he can tell me and the herbs doc says it's just a herx. I find that hard to believe though when looking at my brain MRI. that and the way it progressed. First my left toe, then foot, then leg, then arm and now the whole left side. Thi has been over 2 weeks or so. In another two weeks I don't know if I'll be able to walk. I feel like a herx wouldn't behave like this.
Posted 9/18/2014 6:59 PM (GMT 0)
I'm surprised your Lyme MD isn't more helpful. We've all seen the stories of people losing the ability to walk from lyme...it can happen...but you are getting treated, so hopefully you will see an improvement soon...and the progression will stop.
Were you ever on antibiotics for the lyme?
Posted 9/18/2014 7:29 PM (GMT 0)
The only think that I could think of is that toxins are being stirred up from deep places, so maybe ease back on treatment and checkout the herx theory or increase detox.

My brain was full of inflammation that was shown on the MRI but my doctor didn't treat me for anything. Just cut me loose.

I would work on reducing inflammation maybe through your diet. Maybe explore heavy metal toxicity or other infections that could be impeding your recovery.
Posted 9/18/2014 8:00 PM (GMT 0)
Thanks. I am on Doxy. I am clear for heavy metals. I detox constantly and my diet is based around reducing inflammation.
Posted 9/19/2014 2:59 AM (GMT 0)
Akkami Doxy only addresses Lyme. It does nothing to Babesia or Bartonella. Then there are other infections that you might have. What tests have you had done?
Posted 9/19/2014 3:09 AM (GMT 0)
How long have you been doing Dr. Zhang protocol? Could you possibly be allergic?

There is a doctor that blogs about his lyme patients. One patient kept getting worse with treatment. Turns out that every time he treated the lyme it would cause his body to attack itself. So the smart doctor figured it out and the person got autoimmune treatment first, like IVIG and once it got under control went back to treating lyme.

What does your MRI show. I have one lesion that is a tumor and inflammation in cranial nerves. One doc told me the inflammation was autoimmune another told me it was lyme. Got everything else ruled out.
Posted 9/19/2014 4:53 AM (GMT 0)
That really is scary.

I hope one of the MODS sees this.

I'm so sorry you have to go through this. I highly recommend that you go to an LLMD (not ND, MD). In addition, I would ditch all the neurologists until you can find an LL neuro. You need to do this asap! Start with an LLMD (sorry, you may already have one), and go from there.

Prayer is good, and I think it works, but you need to take more immediate actions (in my opinion).

You might also try a different protocol, and make sure your co infections are covered. Have you had an MRI of the brain and spinal cord? You also need to do that (sorry, in my opinion).

Margaret
Posted 9/19/2014 1:13 PM (GMT 0)
Hi Akkami,
First of all, I'm so very sorry that you are going through this!! I'm going through herxing right now too - ugh!

When did this all start? What kind of a time line do you have? Did it start when you started Zhang's herbs or shortly thereafter? Or when you started - or stopped - something else?

I would like to say that you may be doing a lot to be detoxing, but that doesn't mean that it's enough for your body- especially since you said that you are taking things that can hit possibly 3 different infections all at once - that's a lot to tackle all at once!!

Have you had any of the gene testing that is done to find out if you have those gene mutations that prevent the body from detoxing very well? If you have them, there are treatments that will help. Backing down the dosages of the anti-infective treatments would let you know if you are creating too many toxins for your body to deal with.

It's possible that the combination of Zhang's herbs and the Doxy aren't doing well for you - maybe you should stop one of them for a while just to see if it eases your symptoms?

And although I've seen quite a few posts like yours here (trouble walking, afraid of being paralyzed), I don't remember what those members were treating at the time or what infections it was suspected they had - but you could do a search to find those threads. Just remember to use the word Lyme first in every search that you do to keep your results mainly from this forum.

As Louise pointed out, you may need some 'specialized' treatments, like IVIG, or something else. This is why we always recommend that you use Lyme literate doctors, they are the only ones that will likely connect your symptoms to Lyme and be able to figure out how to help - all the other doc's are just stabbing at the darkness since they have no clue as to what they are actually dealing with.

You said that you find it hard to believe that you are herxing when you look at your brain MRI - why? What did you see?
Posted 9/19/2014 2:27 PM (GMT 0)

Thanks everyone.

 

Lyme Babe- The herbs I am on supposedly address the Lyme, Mycoplasma and possible Bart. I was tested for all coninfections through IgeneX and they were all negative. I am positive for Mycoplasma through LabCorp. I asked Zhang if I should stop the Doxy in while on the herbs and he said it was fine to keep on it. I also asked my LLMD and he agreed.

 

Louise- I have been on the protocol for about a month. I have wondered if I am allergic. Not sure how I would know. My Lymph Node in my neck has been swollen since I started but I took that as a sign that it was killing a lot of bacteria. My MRI shows diffuse lesions. Also there is a lot of white completely surrounding both ventricles. Apparently that is very bad though I have no context so who knows.. My first Neuro said this is definitely MS but I want you to see an MS specialist. I then went to the Cleveland clinic, saw their expert and got a lumbar puncture. She said it’s not MS. OK… I then saw another MS doc she was awful and barely looked at me…OK… Saw another supposed MS specialist. He is the one that told me if I just had the MRI and symptoms A thru E he’d say MS. But since I have symptoms thru Z pluse a few more for good measure, he can’t call it MS. He then cut me loose basically.

 

Traveler- I would say the timeline for the numbness is similar to the timeline in which I started taking the herbs. The neuro issues ramped up about two months befor that though with the constant Parkinson’s like shaking, and the fingers on my left hand wanting to curl up on their own. Both of which sill happen though the finger curling has been less. I have been tested for the MTHFR gene mutation and it came back normal. There is a lot of white on my brain MRI. I just wonder if the damage is already done to some extent? Even if we evict all these squatting bacteria, can I really heal that much of my brain? It seems hard to imagine.

 

Everyone here is so great and I really appreciate all the input. My LLMD is a great guy but I think I have really stumped him. It’s not like his primary focus is Lyme, he just happens to treat it and he is trying his best.. It’s just not working. So I am going to drive up to a clinic that is set up better for Lyme and they have many documented success stories. It’s about four hours away but I managed to get an appt for this Monday morning. So maybe he will have a different tact. I am going to try not taking the Zhang herbs or a few days and see if anything improves.

 

Thanks again. J

 

Posted 9/19/2014 3:28 PM (GMT 0)
While I've not had another brain MRI or SPECT scan to know what has healed, I can tell you that the brain does heal!! Otherwise I wouldn't be sitting here typing this, as at one time I lost all ability to communicate more than just a few short sentences at a time - orally or written. So hang in there!!


Keep on asking questions and trying things! I'm glad you chose to go see someone that may have more experience - sometimes a change in doctors is just what we need!!

Please be sure to let us know what you find out on Monday as soon as you are up to it!!
Posted 9/19/2014 4:17 PM (GMT 0)
Akkami - If I were you I would do what Trav suggested in an earlier post - back off for a few days to a week on maybe the doxy or your herbs - and see if your symptoms change....then you may be able to attribute the increase in symptoms as a herx?
She suggested this with me...near the end of a 12 day herx I was having...and it worked.
I don't see how trying this would be any harm?

Regarding the brain healing - It definitely can. People can have serious brain injuries and heal over time.

My heart goes out to you....please keep posting on your progress!!
Posted 9/19/2014 4:33 PM (GMT 0)
Thank you. I will back off the herbs for a while. The place I am going to does abx and herbs so I will ask him about my current herbs.
Posted 9/19/2014 4:42 PM (GMT 0)
You can get drug induced parkinsons. That was happening to me. My spinal tap also opened the flood gate for severe MS and parkinson and seizure like symptoms. Maybe it stirred up the pot or created some severe inflammation. I really don't know. It's taken a long time to flare down. But if symptoms started with herbs I don't think you would suddenly have MS.
Posted 9/19/2014 4:51 PM (GMT 0)
Thanks. I had a lubar puncture so maybe that messed me up too.
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