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twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 3/19/2011 9:23 AM (GMT -6)   
OK I guess I do not have an official MS diagnosis but did have a CIS episode with left side muscle weakness, numbing, tingling, brain fog, fatigue and blurry vision.

According to my neuro, the episode is over because the muscle weakness is gone as well as most of the other symptoms. I still have major fatigue, brain fog and blurry vision however. These symptoms are preventing me from returning to work. My neuro seems to think that I shouldn't be having these symptoms and that once my fatigue reserves are restored after getting appropriate REM sleep, I will be fine.

I have been on copaxone for almost 2 months which he attributes to putting me back to "normal". I feel far from normal and tried to tell him that. I am fatigued and brain fog 24/7. I need a nap everyday and if I don't lay down, I get nausous and ill in the afternoon big time. I have to pace myself all day to avoid a big crash. Things like doctor visits can make me more fatigued the next day.

I quit my job this week because I havent' been able to work for over a year. Every time I tried to go back for even half a day, I crashed for a few days after. I have contacted an attorney and started the disability process.

I did have lyme disease four years ago which I treated for over 3 years. My symptoms are different from when I had lyme except for the fatigue and brainfog. My neuro says it's not lyme because I "overtreated" it already. My lyme doctor says it's lyme not MS related.

So I don't know what to do. Should I assume this is all lyme related and stop the copaxone? Or should I assume it's CIS and that I may develope MS and keep taking it even though my neuor says I should be "normal" right now?

Maybe the copaxone will help even if it is lyme related because it seems to have helped the muscle weakness. Maybe it will help prevent further lesions even if they are from lyme. I've read of some lyme patients with my same situation who are on copaxone and low dose Naltraxone and that is the reason I agreed to do both. Maybe I have lyme induced MS as some have suggested.

If anyone has a clue, could you please help me??

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3568
   Posted 3/19/2011 9:58 AM (GMT -6)   
Hey Twingirl,

You are in a tough spot. I see that you didn't post this on the lyme board. I know there is some controversy there, but you might try it anyway. You could get some good advice there. You can certainly ignore any extreme opinions.

I can't help you, really. I can only tell you what I would do. I would treat both the best I can. It seems like some people feel like you can treat lyme with supplements and diet. If you are no longer doing the antibiotics then just do a lyme protocol that you believe will help or has helped you.

I feel strongly that copaxone and LDN are not going to cause Lyme to worsen if you are still suffering from that. If you have decent insurance and can afford to stay on both copaxone and LDN, then do it. It may well be Lyme induced CIS/MS. If you at all suspect that Lyme may still be a part of your life then you may want to consider avoiding or limiting steroids.

My neurologist said to me that by the time you experience any MS symptoms (like when a flare comes on) the full damage has been done. By taking steroids, you are simply reducing inflammation faster. It won't actually treat or reverse any subsequent disability you may end up with as a result of the flare/MS damage. I hate taking the solumedrol and I usually don't take it during a flare. I just wait it out.

As for fatigue and brain fog, there are many meds that can help with this. You need to aggressively ask for symptom relief. If your doctor refuses then you need to ask the question why and perhaps go for a second opinion.

My first year of MS was hell. I was not sure I could continue my job. I was asking myself over and over if this was worth it. I would come home from work and crash for the rest of the day/night and then get up and go to work. It has gotten much better. I am working and dealing wtih a whole array of chronic/permanent symptoms. Everyone, however is different. I am just saying, that you may feel better over time. Meanwhile, treat symptoms. It took me well over a year to feel like I was managing life/work/MS symptoms.

Good luck. Keep me posted.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 3/19/2011 5:01 PM (GMT -6)   
Thank you Gretchen. I am still treating the lyme with alternative methods and think I will stay with the LDN and copaxone for now. It's just so frustrating to be told I should feel normal when I do not. How does he know how I feel??

I wasn't aware there were meds for fatigue. I will have to find out about those.

My neuro has suggested steroids for me several times and I refuse to do them due to my history with infections. I will not do anything that turns my immune system off. I am only doing treatments that will complement lyme and MS.

I don't think I will post on the lyme board. I used to post there when I was treating just lyme and that was bad enough. All the nice people are gone and I haven't posted there in a while for that reason. I know better than to ask anything about MS on a lyme board. I would be bombarded by everyone! lol.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3568
   Posted 3/20/2011 2:19 PM (GMT -6)   
Hey Twin,
 
I get you there.  I get in trouble all the time for arguing over there.  I am very supportive of lyme and chronic lyme.  I get caught up in arguments (my own fault......it does take two to argue) over there when I hear that MS, ALS, fibro, RA, Lupus aren't real diseases- they are just untreated lyme. 
 
I get that we (the medical community) don't understand many things about our bodies and diseases, but I can't imagine that Lyme is causing all of those things. I have done my research too.  Colorado has one of the highest incedences of MS in the world and yet it has one of the lowest for Lyme.  Likewise, the South has quite a high incidence of Lyme and yet low on the MS spectrum. 
 
The two may be linked; a Lyme infection could well be a trigger.  But once MS is there, I do believe it to be  a mal-function of the immune system and not just the result of the infection itself.  Of course, these are just my opinions.  I certainly don't know for sure. 
 
I do feel in my heart that I do not have Lyme.  I don't think I ever had it.  I have never had flu type issues except for once when I had the flu.  I don't cycle every few weeks.  I don't have random fevers or joint pain.  I am missing some of the major hallmark symptoms that seem to be the essence of Lyme.  I feel foolish justifying my diagnosis but here I am doing it anyway. 
 
It does appear that you have either had Lyme, or you have it now, or you have both Lyme and MS or your Lyme triggered your MS/CIS. 
 
Just keep messing with symptoms and hope that you are already treating the diseases (copaxone plus lyme protocol). 

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 3/20/2011 2:30 PM (GMT -6)   
I know I had lyme before because of the tick bite, rash and positive test. I also had typical symptoms like joint pain.

But now ALL my symptoms are neuro and the typical lyme symptoms are gone.

So that is what is making me think it may be MS.

I hate that we have to guess about this stuff. I'm going to keep on acting like it could be both.

Thanks for all your input!

atwin
New Member


Date Joined Apr 2006
Total Posts : 5
   Posted 3/22/2011 4:05 PM (GMT -6)   
hey twingirl,
first of all i'm a twin too!!!! identical, you??

anyway I'm sorry for all you have been through. I logged on today for only the second time ever and felt pulled to write. I'm not a believer on telling anyone what to do so anything I say is only FYI. I just speak from my own experience.

I have MS. I was diagnosed 5 years ago and can trace symptoms back 9 years. I was diagnosed by a neurologist, but instead of going the western med. route for treatment I turned to a Naturopath Doctor (ND). Between metal detoxing my body and converting to a wheat-free dairy-free diet I have reduced my symptoms tremendously. I also take daily supplements from my ND, all natural, get foot baths and various homeopathic remedies as needed. I have had to adjust my life in that I can't tolerate extreme heat, so biking and working out to a sweat don't work for me anymore and can still be fatiquing. I started swimming (in cool water) and I do yoga. I relate to having to pace self, but i'm grateful that I can do what I do.

I'm sorry to go on, but I just wanted to add my 2 cents.

I wish you well and I'll check back.

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 3/22/2011 4:32 PM (GMT -6)   
Thank you for your input atwin. Yes I am identical. I love my sister!!

I have also done metal detoxing and have tried the gluten free/dairy free diet. The metal detoxing was very helpful but the gluten free/dairy free didn't help much. I slowly added back into my diet without any changes. I do not eat much wheat anyway, but I do like to eat cheese.

I see a doctor who practices preventive medicine and most of my health care is done with herbs and supplements. My husband talked me into the copaxone, and it does seem to be working for the muscle weakness and numbness. So I plan to stay on it for now. I also take LDN and enzymes along with other minerals and supps.

I eat mostly organic whole foods and avoid processed foods and that is what I've noticed helps the most. I have an infrared sauna but can only stay in for 20 minutes, but it does help detox very well. I also do detox baths and have even done coffee enemas. But despite all these things I've tried, I am so fatigued and brainfoggy!! I just purchased some EM protection devices and will see if that helps at all.

Thank you again for your suggestions. I appreciate it!!

atwin
New Member


Date Joined Apr 2006
Total Posts : 5
   Posted 3/22/2011 5:21 PM (GMT -6)   
you certainly have tried alot. Sometimes it would be nice to just NOT think about having to try something else, ya know??!.... I too eat mostly organic. I can eat goat and sheep dairy and this works for me. I'm not sure what EM protection is.

anyway I didn't mention that last year I had a Bio Meridian Scan done and this is what some of my treatment is based on. I feel it has cleared my brain so that I can think clearer, more than anything. But it's another approach to getting to the deep cellular layers by checking in with the body to see what it needs, and what layers can be detoxed. So it's more of a series of homeopathics. All cell level stuff...deep deep down.

so Google Bio Meridian if you wish.

Thanks for sharing

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 3/22/2011 6:15 PM (GMT -6)   
EM is electromagnic energy. The stuff from cell phones and electronics and appliances, computers. It's really not healthy for anyone, but some people are more sensitive than others. I bought some devices for my cell phones and computer and other appliances. I have no idea if it will help.

I had some sort of scan done by a NP about a year ago. He put all my supps and meds on a machine and could somehow tell if they were good for me or not. Then he did some sort of body scan using my fingers. He told me that I was wheat sensitive, but not gluten intolerant and that I had some viral and parasite infections. I'm not sure if it was a bio meridian scan, but it sounds like something similar. He gave me some drops to take which I did for several months. It didn't seem to help much though, so I stopped going because it was out of pocket.

Right now I'm sticking to things that are not so expensive because I've paid out of pocket for so many things. I need to see if I can get disability before I can decide how much money I can spend on my health. The natural healing is most always out of pocket. I've spent the past 4 and half years trying to get healthy. I've come a long way, but I'm still no where near normal. Won't stop looking till I am.

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 3/23/2011 2:41 PM (GMT -6)   
atwin, I found the card for the NP I went to and the treatment I had was called Bioresonance Balancing which I think is different from biomeridian.

atwin
New Member


Date Joined Apr 2006
Total Posts : 5
   Posted 3/24/2011 1:34 PM (GMT -6)   
twingirl,
gotcha, does sound similar.

some day all this stuff should be covered by insurance....when "we" get a way from our Western thinking and realize that homeopathic/naturapathic/alternative ways are REALLY doing more.

take good care....keep the faith
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