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Ugh...worrying about stuff again today.

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Posted 11/30/2011 5:45 PM (GMT 0)
Hi Everyone: I realize that I'm probably just having a bad day but I need to vent my worries.

I'm having MS worries again. I'm having an MRI on 12/12 at UCSF of my brain. I had/have 20 lesions on my brain discovered on MRI that I had in July 2010. Had another brain MRI six months after that...no change. Now, I am having another one and I'm so freaking scared they are going to tell me it's MS this time. I have a positive test for Lyme through Igenex and am making real progress with my ABX treatment but I can't shake this worry!

Also, I posted about being confused with my Cymbalta RX and thinking that I accidently took 30 mg instead of 60 so I went back to 30. I'm sure that I'm feeling some of that too. Some of the symptoms that I had (neuro) seemed to improve when starting the Cymbalta. Now that I've decreased, I seem to be having some of the pulsating feelings in my left leg return along with a very itchy left ring finger. It's all stirring up a lot of worries and I 'm now thinking that oh....the ABX have NOT been working but instead it was the Cymbalta making me feel better.....not the ABX....

Ugh....I'm kind of having LOTS of worry today!

Also, I've been busy on the internet which isn't good. Researching things like "do lyme lesions go away"...etc. I saw a post by a doctor yesterday that said that lyme disease does NOT cause lesions! Aaaakkkkkk

My MRI is on 12/12/11 but I won't see the neuro until 1/11/2012. Ughhh....that is going to be a long wait for me. I'm so scared and really having anxiety about this!
Posted 11/30/2011 6:15 PM (GMT 0)
Aww, Carrie!
I am so sorry that you can't seem to shake this fear of MS. We have told you that Lyme mimics MS frequently, and that your symptoms are in line with Neuro Lyme, so I won't repeat all of that info - unless you really need to see it again.

Why are you having another MRI? If it's just to find out if those lesions are gone yet, may I suggest that you cancel your appt? Allow your body to have the time to heal before you go searching for evidence that it's not. Healing from TBI's can be such a long slow process for some. I seem to remember that you have been making progress though.

There is soooo much misinformation out there about TBI's!!! A lot of docs who claim they know about these infections really don't have a clue! That's why we are seeing some members not making any progress after an extended amount of time with one doc and needing to find another. Besides that - not one single doctor out there knows all there is to know about Lyme and the other TBI's! For one to say that those lesions won't heal was wrong - there is plenty of evidence that they do. The other thing that I found out in my research reading is that after a certain age, we all have a very real potential to have lesions on our brains - tick-borne infections or not!! So they can't be too harmful, right?

Should anyone tell you that you have MS instead of Lyme, don't even think twice about it - at least not until you have completed your treatment for TBI's and you still have some major symptoms indicating MS.

The other thing to do..get your mind off of the MRI!! The more you allow yourself to think on it, the more worry you will have - at least that's how things work for me!

Hang in there, Carrie!! Keep up the good work of treating these infections and detoxing and you will get to say one day - I beat Lyme Disease!!!
(((((hugs)))))
Posted 11/30/2011 9:44 PM (GMT 0)
Hi Trav and WW:

thank you so much for your posts. I'm continuuing to just have a bad day. I think decreasing the Cymbalta is having an effect on me as well as possbily allergies. I'm in Northern CA and it's really windy here today.

Trav: I decided to go ahead with the MRI because I think about it a lot. Also, my GP wants me to get it and I know that if it comes back with no new lesions (or better yet...few lesions), than it will be a HUGE relief to me. My MS doc told me that after the first repeat MRI showing no new lesions that I had one foot "out of the MS bucket". If my next one was clear, then I have nothing left in the bucket and that I would not need to repeat it. I really should of have it done in July but my daughter got married in August and I was too scared to do it before her wedding. I pray that WHEN everything shows up clear that I can finally brush this little MS bugger off my shoulder and completely get on with healing and get rid of the anxiety associated with my worry about this....

WW: I've actually been meaning to ask you....what were/are your symptoms and why were you dx with MS? I hope you don't mind sharing. I'm soooo scared of this that when I start worrying about it, it completely consumes me. Also, now that I'm decreasing my Cymbalta, I know that is playing into my worry. I never ever had the need for antidepresants before all of my health issues started. I just feel so sad today and worried.

Thank you to the both of you for replying. It is so nice to be able to come onto this forum and get some reassurance and guidance from others who are experiencing the same issues. My family is supportive (most of the time) but they are not going thru this....
Posted 11/30/2011 9:52 PM (GMT 0)
Hey Carrie,
I'm really sorry that you are still having that bad day. The good thing is that with Lyme and friends things change so much, that you have a pretty good chance of having a better day tomorrow!!! turn

Now that you have explained why you want to go through with the MRI - I agree. I thought you might be doing it kind of on your own, just to see if those lesion were still there. Now that I understand, I think you should go ahead and get one done too. Only you have to promise to let us know what the results are!! (LOL - you don't really have to promise, but I hope you let us know still!)
Posted 11/30/2011 10:37 PM (GMT 0)
Carrie - this is NOT MS. I am not a doctor but the lesions you see are NOT MS - My very experienced LLMD has told me that Mmany, many folks with MRIs like this get misdiagnosed with MS. Then they get lyme treatment and they go away. I have numerous (too many to tell) and she has assured me that Lyme and MS are completely different things. Nobody wants lesions but the Lyme lesions can be successfully treated and lessened or even gotten rid of via abx and other Lyme treatments...is your doctor trained in Lyme treatment? If not, I would go to one who is!  These main stream docs do NOT understand Lyme - folks get diagnosed falsely with Parkinsons, MS, lupus, rheumatoid arthritis and even ALS! Imagine being told you have ALS and it's really Lyme. Seriously - find an LLMD and get the proper treatment
Posted 12/1/2011 5:01 AM (GMT 0)
Carrie I have to say that I understand exactly what your fears are! Remember back in July I got my mri results and showed lesions. The report said suggestive of demyelination disease. Well that scared me to death! I worried constantly and the more I worried the worse I felt. I came here alot and several people repeatedly assured me that lyme does indeed cause lesions and lesions can be reversed.

Somehow hearing all that has put my mind at ease. I figured that the lesions were there before I knew it and I wasn't scared then so now nothing is different except now i know. As long as I am functioning ok, I guess I will be fine.

Also for me, since I have ascaris in the brain also, they said it is even possible for it to be ascaris lesions. Even that will heal so just hang in there and try not to be afraid. Believe me, being that afraid is an awful feeling. I cried so much over my lesions but looking back i dont know why. Also know that there are others right there with you in the same boat. Like me! It is lyme and the lesions whether they are still there or not will go away in time. Even if there are new ones, I still believe it is lyme.

How coincidental would it be to develop MS AND lyme at the same time?

Also, just to let you know, there is a frequency for depression if you want to coil for it. I am going to try that myself.

I will say extra prayer for you that you find comfort and peace and of course no lesions.

(((hugs)))
Posted 12/1/2011 2:05 PM (GMT 0)
Carrie,

I was up last night worrying about the same thing. I have had several MRI's over the past few years that showed nothing. Finally in 2009, they found a small lesion on my brain stem. I had a spinal tap that had more than 4 oligoclonal bands.

The reports all read: SUGGESTIVE OF DEMYELINATING DISEASE, (MS)

The MS Specialist told me I did not fit all the criteria for MS but to keep coming back every six months for MRI's. It has been 8 months since my last MRI.

I have had trouble walking since 2006-2007 and out of frustration found out about Lyme and Igenex testing through the internet. The following are my results:


IGM
18 kDa +
**31 kDa IND
**39 kDa IND
**41 kDa ++
45 kDa +
58 kDa +
**83-93 kDa ++

IGG
**31 kDa IND
**39 kDa IND
**41 kDa +


I now see a LLMD and am taking IV and oral antibiotics. I never knew anything about Lyme disease until this Summer. Even though I was told I did not have MS, the O-bands in my spinal fluid really bother me. I have read that Lyme can cause O-Bands in the spinal fluid but I have not found too much evidence of that.

I have a lot of symptoms of Lyme and MS.

IMO. I do not believe Lyme causes MS. I think that they are two separate diseases. (Again, just my opinion) I may be unlucky and have two horrible diseases. ?? I just don't know.

Because of my spinal tap results, I can't get MS out of my head. I have had not made any real progress on antibiotics either.

In my case, if I do have MS, I will not take any MS drugs so I guess it does not matter - I am sticking with the Lyme treatment for now.

I am writing this long post for you and for anyone else in this situation. It is important to read other peoples experiences. IMO, there is little information about Lyme. I had three ELISA tests over the past three years and all my tests were negative.

I would like to repeat my Igenex testing now that I am on antibiotics, but can't afford it right now. My insurance will not cover a $200.00 test but will cover a $6,000.00 MRI done at the hospital. ??


After my agonizing night last night, I have decided to repeat my MRI's whenever my PICC line comes out. As long as insurance covers my testing, I would like to know what is going on ib my body.


Good Luck to all of us
Posted 12/1/2011 4:46 PM (GMT 0)
Hi Everyone..

THANK YOU THANK YOU THANK YOU for all your responses. I'm sure you can all relate, but I simply cannot discuss my concerns with my husband...it's not that he doesn't care, but he says that I am crazy for still worrying about MS and to stop it. I think he just hates to see me worrying so much.

I slept very well last night and feel much better today. Yes, I'm still worrying though. I will be so relieved if this next MRI is clear and they can finally completely rule out MS. I keep thinking about my symptoms and some of them are/were clearly falling under the MS guide. For example, early on when my symptoms first started, I had a terrible tightening around my tummy. I had no idea there was such a thing as an "ms hug" until much later. But, I was telling my hubby that I was even having trouble breathing when that would happen. This happened for about two weeks off and on and then went away never to come back. Also, to this day, I feel like my muscles in my hamstrings on my left leg get SO tight....I feel as though they are going to snap sometimes. I worry that is what they call "spacsisity". I don't know.... And, if it weren't for the lesions on my brain, I could totally accept that this is Lyme..... I honestly wish that I didn't know about the lesions!!!!

Also, here's another interesting thing.... about lesions....

My MRI reports says about the lesions "more than typical for a patient of this age". My neuro said it is not normal to have even one lesion....My GI doc tells me that as people age, they get lesions......WHICH IS IT?????? No one seems to agree on anything!!! Geezooo

My dizziness has REALLY kicked up again....I can be sitting still and then suddenly, my brain starts rotating in my head.... It's the weirdest feeling...I wouldn't even describe it as dizzy, it's something else. I'm wondering if this could be described as a "brain zap" since I decreased my Cymbalta from 60 mg to 30 mg.? Although brain zaps are more described as an electrical shock type thing but that is not what I'm feeling.

Wiseguy: I'm so sorry that you are worrying about all of this too. I feel for you....I really do. I try to be positive but when I start thinking about all of this, it really really gets to me..

Well everyone......thanks again for all your support. I was having a very bad day yesterday and to be able to get on the forum and talk with others who can relate...well, it means a lot!

Carrie
Posted 12/2/2011 1:02 AM (GMT 0)
TBD is known to cause brain lesions that can look a lot like MS on an MRI. But these lesions do go away with treatment. I say treat the Lyme first, and then reassess whether there are further issues that would suggest MS (but with diet modification and TBD treatment, I'd be surprised if symptoms would be nearly as significant...).

Vitamin B 12 is required for myelin sheath repair. B12 deficiency can mimic MS.

Gluten & Dairy are also connected to autoimmunity (this is a proven fact in research...see http://www.theglutenfile.com/ and search pubmed.gov for the milk-diabetes type 1 connection). A gluten-free, dairy-free diet may have saved my Aunt from dying from complications from MS...at least, my Dad (who had Myasthenia Gravis, which is another autoimmune disease, or he may have had Lyme...we don't know) thought so...and he researched that stuff a lot.

GABA and Magnesium can go a long way to help with anxiety and worry. At least, this has been my personal experience. I am so, so much calmer when taking both! I don't know if GABA is safe to take while on Cymbalta - ask your pharmacist and your LLMD about this.

I also find prayer helpful when I am worrying about something...I tell myself to turn my worries into prayers. Doing so really can change my perspective and help me to deal with situations that I can't change. Not saying I'm perfect on this...I have lots to learn and still struggle with worry and anxiety sometimes, but prayer has been a very big help.

I hope this helps...take care,
Posted 12/2/2011 1:21 AM (GMT 0)
Carrie,
From the reading that I have done over the years about all things Lyme indicates that we do get lesions on our brain as we age - now I don't know if the lesions that can come from just aging look different than those that can be caused by Lyme and MS or if they all just look the same - but we can get lesions on our brains as a "normal" part of aging.
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