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MS or Lyme? Plz help

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Posted 1/27/2012 11:45 PM (GMT 0)
Unidentified White Spots on MRI are always Lyme...
esp. if your Neuro is "unsure".
It's what happened to me and so many thousands of others.
Just about to have mine repeated after 7 yrs finally got a script to...
and maybe they'll give me an MS diagnosis
and I will walk politely away toward my LLMD.

I did homeopathy for LYme last year and got similar symptoms until I stopped.
It's the lyme coming out of your organs and into your nerves...and it's caused nerve damage.

Good luck.
Posted 1/28/2012 2:17 AM (GMT 0)
I've found that the more I progress into treatment, the more neurological symptoms I have, which I attribute to my body being overwhelmed with (neuro)toxins. Some people have a genetic trait that makes it more difficult to eliminate toxins, so this might be something to look into. For me, adding cholestyramine, which binds to toxins so they can be eliminated, instead of reabsorbed (due to the genetic issue) has been really helpful in my treatment. I know there are some other products that act in similar ways, as well.
Posted 1/31/2012 3:17 PM (GMT 0)
To be honest Im so scared last few days... My right hand is completely numb, my legs are very weak so I barely walk, I also have nystagmus and many other symptoms. Now Im taking only minocycline and i want to start taking chlorella to clear my body... According to some studies minocycline is also good choice for MS.
Posted 1/31/2012 5:08 PM (GMT 0)
Hi James,
You really should put your worries about having MS aside - you stated that even the MS specialist doesn't believe that you have MS and Lyme is enough for one person to deal with anyway! Believe me when I tell you that we really do understand how scary all of this is to you!

Are you sure that you are getting good blood circulation to your hand? That is the first thing that needs to be checked. If you are, then it's time to try detoxing more to see if that helps. The toxins that are produced by the bacteria as it dies is quite toxic to our bodies - and if a person has Neuro-Lyme, then those toxins are in our nervous system, interfering with the nerve impulses, thus creating things like numb areas.

By detoxing, most of us have a decrease in the number and/or severity of symptoms as it opens up the detox pathways. Please be sure to dry skin brush and do the soaks as well as being sure you are drinking at least 64 ounces of water a day. Drinking plenty of water is really important as our bodies can't flush the toxins if we aren't drinking enough.

Also be sure your diet is "clean". You want to avoid as many processed foods as is possible - these have chemicals and other toxins that our bodies much process out on top of the toxins that Lyme and other tick-borne infection produce in us. That makes our liver and other organs have to work even harder and get over whelmed even faster.

I hope this helps some.
Posted 1/31/2012 5:20 PM (GMT 0)
Traveler: Do you think that stopping all abx and wait what happens is bad idea?
Posted 1/31/2012 5:42 PM (GMT 0)
Actually that's something I really can't answer. I simply am not qualified to know and understand what all you may be dealing with, what all you are doing and where you are in your treatment.

In general, it's really not ever a good idea to stop your treatments. It allows the bacteria time to regroup and hide, build a resistance to the treatments, or just have the symptoms become truly overwhelming. With that being said though, there are some very good reasons to stop treatments from time to time.

Have you stepped up your detox routine yet? If you don't want to do that, or if you can't for some reason, then you really, really need to call your LLMD. He/she is much better qualified to make a good recommendation for your exact situation.
Posted 2/6/2012 6:33 PM (GMT 0)
Well I guess I should chime in as someone else in the same boat: a raft of neuro symptoms (now for over a year) including tingling, burning sensations, twitching, tinnitus, visual distubs, leg pain, etc., etc. I've had no diagnosis, and am very anxious about whether I have lyme, MS or something else entirely. I understand how difficult being in this situation is: the sx are bad enough but in some ways the uncertainty is worse.

Like you I had a neg lyme elisa, normal mri, normal blood tests, and have been to many specialists none of whom can offer much help. I haven't been called a hypochondriac directly but it's been implied in so many ways...

I also saw an LLMD who prescribed abx (oral doxy) for 3 months. Just being prescribed abx for lyme made me feel better and let me focus on healing from lyme instead of worrying about the what ifs. Even though I had reactions that were like a classic herx, unfortunately after 3 months on doxy I don't feel better and am now back in limbo.

One difference is I have had hundreds of tick bites over the years and about 10 years ago I even had a bulls eye rash which was untreated (thanks to a lyme-denying dr at the time). But what one Dr said recently is "look, lots of people get lyme, many are asymptomnatic; and that may or may not have anything to do with my current symptoms."

Like you I am very impatient with my treatment (I mean impatient to start not to finish). I dont have access to a LLMD at the moment and have even ordered doxy for pets online and tinidazole from india eyes.

I too am struggling with the question of how long to stick with antibiotics before calling it quits, and if so, where to turn next. I wish i had some answers for you but all I can say is that there are others in your situation out there.

Good luck and keep us posted!
Posted 2/6/2012 8:16 PM (GMT 0)
Just curious, but do any of you experience muscle jerking or something with the eyes where they jerk too?

I am still being treated for Lyme, but MS is always in the back of my mind. It would be nice to know that these muscle jerking things (begone the twitching) can be Lyme and not just MS
Posted 2/6/2012 8:24 PM (GMT 0)
oh heck, yeah - muscle twitching is a hallmark of Lyme - my right pec was twicthing yesterday and I showed my wife - she's like, "You're like one of those weight lifting guys!" LOL. But, I wasn't TRYING to twitch it!
Posted 2/7/2012 2:57 AM (GMT 0)
Yep- muscle twitching is HUGE with me too.

Treatment can take a long time. You will feel better before you feel worse. Try to stick it out. There are no clear cut answers with Lyme disease, but it seems like your symptoms have gotten MUCH worse in the last little bit- I would assume that MS that progressed that quickly would show up in MRIs and whatever else they use to test for it. I don't know for sure- but I do know that the amount of numbness you have would be indicative of pretty advanced MS. If not even the neurologist thinks you have MS (and they usually like to diagnose it over Lyme), you probably don't.

Take the time in your next appointment to have a good long chat with your doctor. If you trust him, and know what his plan is, it will be easier to stick with it
Posted 2/7/2012 8:47 AM (GMT 0)
I need my Dr. House :) I have another MRI this Friday... Im so scared...
Posted 4/3/2012 5:48 PM (GMT 0)
Glad to hear. I was also told I had lesions on my brain that "didn't look like MS" but neuro didn't know what caused them. Well of course I do, lyme. I have to tell you I am feeling great these days with my head totally clear, no headache, no anxiety. After a lengthy treatment, all of a sudden symptoms started to melt away fast. Hang tough. You will see results soon.
Posted 4/3/2012 9:33 PM (GMT 0)
This thread is too long and bulky. Start a new thread please, if you would like to continue the conversation!

Thanks
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