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Long post about my Lyme vs MS symptom confusion

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Posted 5/15/2013 5:08 PM (GMT 0)

Hello, I was dxn with Lyme via Igenex western blot this past Feb 2012.  I was also dxn with MS in March of 2009 with MRI with about 6 lesions and Ogliconal bands on LP. lesions located in periventricular area.  During initial MS work up they did an Elisa test for Lyme which turned out negative.

The neuro told me "since elisa is negative I see no reason to do a western blot". And dxn 'probable ms' in my chart. I started on Copaxone injections in 2009 resigned to the fate of this MS.

The reason I went in, in the first place was excruciating neck pains, moderate headaches, dizziness, fatigue, muscle pain in shoulders and neck, muscle weakness in right hand and right leg and insomnia was enough to drive a person mad, feelings of being raging hot one minute and freezing the next, cold hands and feet, itchy bottoms of feet with burning, brain fogginess.

Copaxone  Injections made me SO sick, every side effect of the medication and then some. At one point my groin lymph nodes were the size of small golf balls, I was dizzy weak, off balance and nauseated, I stopped the injections and started to feel a lot better.  The thought of Lyme never left (I lived in the Pacific Northwest during ten years of my life and currently live in North Dakota where I have been bitten by ticks too many times to count.  Not sure if I was bitten in Washington state or Vancouver as well by tick, but do remember a curious red rash on my leg that we put off as maybe a spider bit when I was 12).

I continued to educate myself about Lyme after 2009 ms dxn.  I learned that MS and Lyme are commonly confused/misdiagnosed.  Fast forward to August 2012 where I ran into a old friend of mine in eastern ND and she told me of a LLND and LLMD a few hours to the East of me in Minnesota. 

I took a leap of faith and made an appointment.  I described my symptoms and concerns.  He ordered a WB to be sent to Igenex and 2 wks later results came with negative Igm and positive Igg for borrelia burgdorferi and CD57 of 87.

LLND started me on Lauricidin (helped my fatigue and energy but cause major hot/cold flashes herx?), Inflamasyn, Liver cleanse, garlic, and black Spanish radish.  Last month I saw the LLMD who prescribed me Minocycline 100mg once per day.  I am 2 1/2 weeks into the Mino while continuing with my herbals as well. 

Since starting the mino I have literally felt like I have been hit by a truck, muscles sore, tired, neck pain that radiates to back of my head which feels like its in a vice. This past Sunday I woke up with left sided numbness in my foot and hand, cheek.  My jaw is clenched and painful on the left side as well, and my left hand is trying to clench up on me too especially pinky finger and ring finger.  My left leg is slower and almost 'dragging' I have to make a conscious effort to track up my gait when walking. I have also lost my balance and fallen a few times in the past few days.  I am scared. 

Are these common 'herx' symptoms of Lyme, or am I dealing with my MS?  I am so confused, which way do I go, I have put a call into my Lyme doctor and waiting to hear back. Have not called my neuro as he has done nothing for me in past four years except prescribe me noxious medication.

I live in a very rural area of North Dakota, so there are no support groups for Lyme here that I am aware of.  Yet, I know lyme is here, according to dept of health website for north Dakota we have had 47 reported confirmed cases of Lyme in our small little state. 

This board had been a Godsend to me and. everyone is so kind, just looking again for ideas, and support.  ..

Anyone out there in a similar MS/Lyme struggle unsure of which way to go? I do lean towards that it is Lyme more so than MS and feel my story and symptoms 'jive' with Lyme.  But I am in the middle of either a giant herx or their is more going on. But still scared of the MS since I had lesions on my brain, and positive CSF for ogliconal bands.

Is what I am experiencing right now sound like just a really bad herx reaction or more?

Whew, took me an hour to type this using mostly one hand, wow I need to go back to bed LOL!

Thanks for reading this loooong drawn out post, and thank you in advance for any input or outlook!

:-)
Posted 5/15/2013 7:26 PM (GMT 0)
Thank you WWJD, it is nice to know I am not alone in this battle. And you are right, I need to not focus so much on what 'it' is, and instead on helping my body get better.

I can't hide or ignore what's going on anymore so will have to take a leave of absence from work. I am assuming stress exacerbates this disease as well, ugh.

I have been doing the Epsom salt, peroxide baths and they do help, for diet I've been gluten, and dairy free for sometime now, but struggle with the sugar- it needs to go too I know, lol.

Thank you so much for the help and support, I really needed that today Bless your heart!
Posted 5/15/2013 8:33 PM (GMT 0)
Hi Crescent, My husband was diagnosed with ALS last summer. It is not something anyone wants to hear because people are given 2-5 years to live with this diagnosis. I pushed him to get the Lyme testing done through Igenex and it came out positive for Lyme. We live in the Northwest and have found options around here for treatment. Originally we used the Rife Machine. Then we found a chiropractor in Vancouver, Wa. who used a device called the Erchonia Cold Low Level Laser to treat Toby. He has shown some improvement. He also took an antibiotic for a month and is using natural antibiotics and detoxing methods to help with his condition. There is a wealth of information out there. After doing my own research, I have decided that these neurological diseases and conditions are really caused by the Lyme bacterium. That said, I think ALS, MS, etc. are just names attached to conditions with the root cause being Lyme. Until someone has proof to the contrary, I am going to believe this to be the case. Good Luck. I hope you stick with this forum for information and support.
Posted 5/15/2013 10:53 PM (GMT 0)
Hi Cat, thank you so much for the reply. I really think you are right Cat, this dreaded little 'lyme bug' is the root cause, it is just hard to stop being paranoid when going through these 'down' or herxing days and your mind starts to wonder with all the 'what ifs' it is enough to drive a person crazy. It is wonderful to hear you are such a great advocate for your husband, he is lucky! Is he improving with the Lyme treatment have you noticed? HOw long has he been on it for? I am at it for about 3 1/2 months and hoping I start to see the light of day soon. I thank you again, and wishing Toby well on the road to getting his health back now that you have figured out what is really going on - Lyme.
Posted 5/21/2013 9:06 PM (GMT 0)
Thank you Crescent. Sorry for the late reply. I think the Rifing last year put a halt to the progression of ALS. Toby had the Erchonia Laser treatment done two months ago. The first two weeks were really good. He looked and felt better. He could raise his arms over his head and straighten them which he couldn't do prior to the treatment. He started taking Doxycycline at the end of the two weeks and that put him back. He wasn't happy about it but the doctor said it was due to bacterial die-off. He took the Doxy for the month but would rather not take it again if he sees improvement from other treatment methods. I don't blame him. My guess is that you are herxing. Isn't that what your doctors say? I also wish you well on your road to recovery.

Post Edited (Cat53) : 5/21/2013 3:25:58 PM (GMT-6)

Posted 5/22/2013 5:49 AM (GMT 0)
Sounds like you at least have Lyme to me. All your tests (Igenex in particular) indicate it.

Post Edited (vcast) : 5/22/2013 12:02:20 AM (GMT-6)

Posted 5/23/2013 3:05 AM (GMT 0)
Thank you Cat and vcast for the replies. Cat, I have heard rifing mentioned several times, but don't know what it is. It is very encouraging that your husband saw some improvements while undergoing the rife therapy. How often does he do the rife and is it something that has to be done at the dr's office?
Posted 5/23/2013 5:28 AM (GMT 0)
If youre positive for lyme, thats your problem. Im in the same boat, first diagnosed with ms, then tested positive for Lyme. Lyme can cause lesions, lyme can literally mimic ms.a lot of people diagnosed with ms most likely have lyme. Im from southern Ontario, the highest rate of ms in the world and Lyme is almost non existent. Its a mistake made all to often.
Posted 5/23/2013 1:48 PM (GMT 0)
Thank you sheva, nice to know that their are others out there like us, what you say totally makes sense and nice to be reassured that I am hopefully treating the 'right' illness.

I was born in Fernie, BC and spent a portion of my life living in Vancouver, BC. Visiting often to Victoria to see grandparents, and WA State weekends with friends. All this time visiting was usually spent outdoors hiking, horseback riding and the like. I believe too that Lyme is one of THE most underdiagnosed diseases there is.

Sheva, can I ask when you first started to look at Lyme as the culprit vs MS?
Posted 5/23/2013 10:08 PM (GMT 0)
I didnt look for it specifically. I went to germany to figure out what was wrong with me, using an alternative method of diagnostic testing it showed I had the borrelia bacteria and that it wss my number one problem. Few Months ago just to have more evidence I got bloodwork done at igenex and was overwhelmingly positive with 7 positive IGG bands on my western blot
Posted 5/24/2013 1:18 AM (GMT 0)
RIFE is a machine that emits electromagnetic frequencies. The theory is, if you emit the right frequency that vibrates the bacteria, the bacteria are killed.

Many find RIFE treatment very helpful for Lyme & coinfections as an addition to other treatments.
Posted 5/29/2013 4:12 PM (GMT 0)
Wow, thanks for the info Phantasmagoo and Razzle, great reading and I am going to look into a Rife machine. I don't know what I'd do without this board and all the great people!
Posted 5/29/2013 5:10 PM (GMT 0)
what about connective tissue problems, muscles, parts of body that are suppose to be different

and now not, I don't want to go into details...

maybe it is from inflammation, or true damage,

I don't know if is a sign of ms...


lyme for sure, like I am going to rest, and try to get my brain in gear...
Posted 5/29/2013 10:57 PM (GMT 0)
Wellbeautiful,
Connective tissue issues, muscle issues and more are all in the list of symptoms of Lyme disease. Inflammation can also be due Lyme, since it's an inflammatory disease as well.
Posted 6/6/2013 8:25 PM (GMT 0)
Crescent, Sorry again for the late reply. Razzle is correct about the Rife machines. We haven't been to the healing center for a couple of months now. I have to say that if it wasn't for experimenting with the Rife machines, I don't know at what point my husband would be in terms of ALS progression/symptoms. Most people I have talked to at the center were healed of cancer using the machines. I witnessed the healing process for a couple of people with terminal cancer. The frequencies do not harm the surrounding tissue so it is healthier than chemo. We will return when we can. I wish there were places like this all over the country so people can experiment with them. They run by donation only. Unfortunately the machines are not cheap. The one they like to use for Lyme is the Doug Coil. It is a type of Rife machine. Check out Royal Rife on the web. He is the one who invented the machine back in the early 1930's. Unfortunately, even though he cured people he tested it on, the drug industry was starting to really profit with drugs they were coming out with, so his work was dismissed as an ineffective treatment for healing chronic illnesses. It is fascinating and for everyone suffering from Lyme, the story is all too familiar.
Posted 7/10/2013 9:19 PM (GMT 0)
Hi Crescent11, (This is not a MS related response.)
I live in a small town in Eastern North Dakota, not far from Grand Forks & Fargo .
My two young sons are being treated for Lyme based on their EM rashes, I am also, based on flu-like symptoms, my daughter, from me breastfeeding her, and my husband from well, being my husband.

I think/ hope/ pray we are getting treated appropriately, but am wondering if I would feel better with a LLMD who knows more than me. (I have been educating my local family Dr. via the Managing Lyme manual) Would you feel comfortable sharing the contact info of your LLMD and LLND? The closest ones I found are in Minneapolis and St. Paul, maybe yours are closer?

I just want to make sure we are doing everything right at the first...Please reply to this post if you can (I'm not sure how this works, I'm a 'newbie'!)
Posted 7/11/2013 9:31 PM (GMT 0)
Hey Crescent 11,

so many insightful comments. all i have to add is that i started
Minocin recently because it is supposed to be neuro-restorative, not just neuro-protective. i have herxed too, but not as nasty as yours.
neurontin, naprosyn (nsaid), trammadol, etc. all help with aches & pains; but i'm moving toward more herbal/natural aids as a result of posts on this forum. basically, hang in there. it will get better. I plan
to be on M + pulsed (?) fluconazole for quite some time. One good thing about basic abx's... you can get them on-line (no rx) at a very good
place called 'Aquatic Pharmacy.' The prices are reasonable and they
have to say the meds are only for fish; but most folks know penicillin is penicillin whether you give it to a person, a fish, a chicken, or a lizard. And, by all means: 'Don't give up... don't give in.' (Jimmy V's 1993 ESPY speech as he was dying of cancer)
Posted 7/12/2013 12:17 PM (GMT 0)
Hi Embark,
Welcome to our little community! I'm so sorry that you are all having to be tested, but it's best to know as soon as possible with these diseases, believe me!

If you haven't yet, please read through our "New to Lyme? Start here!" thread that sits at the top of the forum as it's packed full of important information - some basic, some more advanced - but all good info!

Here are the best ways to find a LLMD/LLND:
You can start a new thread titled something like:"Looking for LLMD/LLND in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can also email our long time member, Dan's Mother at:[email protected]

You can also email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!
Posted 7/12/2013 2:34 PM (GMT 0)
Traveler,
I sent you an email via my gmail as I'm not sure how to check the 'computer' email if that makes sense. Please let me know if you got it. Thanks!
Posted 7/14/2013 9:28 PM (GMT 0)
So I take it you haven't received my response? Well dang!! I sent you a nice and long one too! smhair LOL!! I sent it about 2 hours ago. Let me know if you don't get it.
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