HealingWell
Search Close Search
☰

Do I have Lyme? Maybe MS? Confused by doctors need help!

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 11/1/2013 5:27 AM (GMT 0)
I'll try to make my story as short as possible. all feedback/ comments are highly appreciated.

Ok, so in mid-july of this year, I had a weird rash (it looked like a bunch of mosquito bites all over my arms and torso) I went to the ER and they said it was scabies (which happened to be wrong), so I took the predinisone (spell?) and a cream I was prescribed for a week. The following week while at a friends house I came down with the worst headache/ head pressure of my life, I could barely drive back home. I went to the ER the next morning because it was still there but not as bad. They treated me for dehydration but i decided to follow up with my GP a few days after. She thought I had a sinus infection due to the head pressure i described, so I took a round of amoxy which made the head pressure and myself feel a lot better but not completely, I got a CT scan which came back clear. The same week I started to feel this tingly/ prickly feeling on the left side of my torso and a weird cold, tingly feeling on my left leg and hand as well. so I got a referral to a neurologist. The neuro had me do a blood test for Lyme disease as well an MRI of my brain and thoracic area of my spine, I also had to do a few tests for my vision and hearing with all these wires attached to my brain as well a stimulus (shock) at the bottom of my feet which all came back great. The Lyme came back positive but only one of the "bands" were present (band 41)so he said its most likely not lyme but decided to give me a round of doxycycline and told me I most likely have MS because my Brain and Spine had lesions/ abnormalities found on the MRI. I have not had blurry vision, no fatigue, no loss of balance/ clumsiness, no loss of sexual drive or any of the other common symptoms of MS besides the tingly feeling on the extremities that come and go. The doxycycline did make me feel a bit better as far as the tingliness goes. It has been 5 months and the prickly feeling on the left side of my torso is gone, I just feel a "tightness" around the rib area. I am a male and was born and raised in south america, I know it can affect anyone of any race but I read that most MS patients are caucasian/ born raised in north america/ europe and are also female. I am re-testing for lyme as well as other diseases, should get results in a week or two but am not so sure if the results would be accurate since I took a round of doxy and amoxy, which I read is also used to treat lyme.

From your experience what do you think is going on and do you think I have Lyme or MS? I know it's difficult to distinguish the two but any thoughts are helpful!

I am very thankful you took the time to read and respond to this. I really appreciate it. God Bless.
Posted 11/1/2013 4:21 PM (GMT 0)
Hi Flipkid!
Welcome to our forum! If you haven't yet, please do take the time to read through our ,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!

As WWJD has said, those with Lyme have lesions too, so that alone is not enough to diagnose either one of these diseases.

I actually had a doctor scream at me because I wouldn't accept his diagnosis of MS and start steroidal therapy that day! An uneducated doctor can be a dangerous thing! Steroids lower the immune system which will allow any infections the chance to spread throughout the body without anything stopping it.

So considering that MS and Lyme share so many symptoms, the tests are very faulty for Lyme, giving many false negative results, in my eyes it's best to treat for Lyme first - even if there is a good chance that you do have MS. Many with MS -like WWJD - are finding out that they have had Lyme all along.

Your symptom time line sounds suspiciously like Lyme as well.

Band 41 can cross react with other spirochetal diseases - like syphilis, Yaws and Pintas and Leptospirosis.
drugswell.com/wowo/blog1.php/2011/01/26/lyme-disease-and-other-spirochetal-infections

Honestly the best thing you can do is to get in to see a Lyme Literate Medical Doctor (LLMD) or a Holistic doctor and have them evaluate you. If you need help in finding one, please let us know.
Posted 11/1/2013 4:35 PM (GMT 0)
Thank you guys for the feedback. I found a Primary Care Physician under ILADS but not an LLMD. If anyone knows an LLMD in the northern virginia/ Washington, D.C. Area email me

Post Edited By Moderator (Traveler) : 11/1/2013 12:05:56 PM (GMT-6)

Posted 11/1/2013 5:31 PM (GMT 0)
Hi flipkid09
I was diagnosed with ms in 2001 after 30 years complaining & cancer in 2011. Feeling so good after my surgery, ms just sucked for me so I started searching for a way so get rid of it. I would always be a natural remedy person which was the most important issue in my research. To cut a long story short the 2 years surfing the internet led me to Lyme. I don't know if I can name products here so feel free to email me. I am almost 6 weeks into my treatment & I feel I am doing the right thing. I climbed stairs last night for the first time since I started & I am very impressed with my progress.
Brain fog, spasms, burning feet, ms hug, drop foot are all gone & balance has greatly improved.
As I said feel free to email me for more information.
I had problems registering so I dn't know what username I used.
Regards
Mary
Posted 11/1/2013 5:35 PM (GMT 0)
Hey Maggie Anne
I was looking at your profile but could not find your email address. Email me I would love to speak to you about the treatment you are currently doing.

Post Edited By Moderator (Traveler) : 11/1/2013 12:06:14 PM (GMT-6)

Posted 11/1/2013 6:13 PM (GMT 0)
Hi Flipkid,
I'm really sorry, but we have a rule about not posting personal information on this forum. It's an open forum, meaning that anyone with computer access can read these posts (although you have to be a member to post or do anything else) - and we don't want our members to be flooded with spam just because they tried to share their email address with someone.

You can enable your email address on the forum so that only other members have access to it. Go to your profile, go to edit profile, then choose "show my email address" and scroll down to the bottom of the page and be sure to click the 'submit' button to save your preferences.

Also - Reminder to members:

Use good judgement. NEVER rely on information or opinions exchanged to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs. Remember that what's right or has worked for one person may not be what's right for you.

Many members that have been here for a while have used several different protocols, either using antibiotics or using herbs/holistic means - or both - to heal with good results.
Posted 11/1/2013 6:17 PM (GMT 0)
Forgive me Mary,
But we don't know who you are, or what might be motivating you to post here. I wish we didn't have so many spammers so that we tend to question everyone. Why don't you tell us a little about yourself so we can get to know you?

Posting names of products is okay as long as you don't profit from them in any way or aren't a representative or anything like that for the company.

Honestly 6 weeks into your therapy and you are doing well is good! Congratulations! Although hang on, as you could experience a herx still. Have you read through our "New to Lyme? Start here!" thread? It's packed full of really good information and tips and hints to help you through your healing journey.
Posted 11/1/2013 6:38 PM (GMT 0)
Hi FlipKid and welcome!!!! I have a neurologist. Blessed to have one that knows MS and Lyme and the fine line between them. Lyme can effect the CNS and can make the oligoclonal bands positive. Some neuros that don't know Lyme will say you have MS with those bands (found in your spinal fluid) positive when Lyme and even other diseases can turn them into positive. I have inflammation in my brain and spots in my cerrebelum. All Lyme. Thank God for a great neurologist that knows his stuff. I'm with Trav...find a great LLMD, Nautropathic Doctor, Integrative, etc and if you can a great neurologist that knows Lyme! It makes the world a difference!

Like WWJD20 said...better you found out now and going the Lyme route then quite a few people on here that were treated for MS but never had MS :-(

Keep us posted!
Posted 11/1/2013 7:14 PM (GMT 0)
Hello again flipkid09
I am sadly the wrong side of 60 & as I said I was diagnosed after 30 years complaining of all sorts of things. After my cancer surgery I felt so good I read anything I could find about any disease.
Somewhere in my searches I found a list of symptoms for Lyme disease & somewhere else they talked about if you had 20 or more symptoms you more than likely had Lyme. I could answer yes to almost 60 ailments that had been an issue for weeks, months or years & I think my bite was when I was about 16 years old. I had what I now believe was the bulls eye rash back then. I am a farmers daughter & helped neighbours with their farming too which was the tradition, we all helped each other.
My final conclusion in all my research was to try "The Cowden Protocol". Within a week I noticed changes, most noticeable was the drop foot, I could walk without dragging my leg after me. I am on day 40 now of a 190 day rotational treatment which is what they recommend. Because of the number of years I have been unwell I may have to continue for a few months longer.
I have informed my GP that I am doing this but he didn't seem to have much knowledge about the condition. He said he would like to speak to me about it again when he reads up on it.
I have no connection with Nutramedix who supply the monthly boxes of the herbal remedies prescribed by Dr Cowden. I am not getting any payment from them nor do I know anyone working there.
I am living in Ireland & this country is supposed to have the 2nd highest incidence in Europe yet GP's have little or no knowledge of the disease & my GP is not in favour of alternative treatments hence my telling him after I started the course.
I will try & activate my email address for anyone with questions as I believe knowledge is education. I also know that there is an awful lot of useless information on the internet & it is up to each person to sort out what's what.
Regards
Maggie Anne
Posted 11/1/2013 7:23 PM (GMT 0)
Thank you Maggie!
And I'm so sorry that I questioned you - thank you for understanding.

I would love to have you stay on the forum since you are doing the Cowden protocol. I'm afraid we don't have many members that I'm aware of using it right now.
Posted 11/1/2013 8:00 PM (GMT 0)
Yes Thank you very much Maggie Anne! I'm glad you are seeing symptoms fall off. If you have had lyme as long as you believe you have, that is quite significant improvement in such a short period of time!

Please do come back on the forum and update us on your progress. As Traveler mentioned it is really nice to hear what has worked for different people.

Some good news is that a lot of the lesions do go away after treatment. It can take years for the brain and nervous system to heal but it is possible!

~beth
Posted 11/1/2013 9:02 PM (GMT 0)
Hi again.
Thank you for your kind words.
Traveller yes I intend to stay on & report my findings as I couldn't find any success stories. On a forum they said people who had success left the forums. I feel that isn't going to help others know if it is as good as we expect when we have an ailment whatever title the medics give it.
Opusgirl, part of the treatment is "brain & nerve cleanse". The first few days are a detox & it was during that time that I noticed the foot drop was GONE & one bottle I was using was the brain nerve drops.
The programme is well laid out on the Nutramedix website but it does take real commitment. It's clock watching, for me anyway, as I grazed on chocolate every time I went by the fridge (ice box in US). Drinking so much water confines me to the house as I have bladder problems but I am hopeful it will all be worthwhile.
Other changes I have noticed are: burning feet...... gone, brain fog......gone, feeling in my feet & legs is coming back.
Sorry this is so long.
Maggie Anne
Posted 11/1/2013 9:06 PM (GMT 0)
Hey Maggie Anne,
Would you consider starting a new thread with the title something like my experience with the Cowden protocol or similar? That way others searching for information could find it easier and others would know about the conversation and could ask questions?

Thank you for thinking about this!!!
Posted 11/1/2013 10:06 PM (GMT 0)
Hi Traveller
I don't know if I can manage to start a thread but I could have a look.
I must make it clear that I have never been diagnosed with Lyme. I started the protocol by self diagnosis having cut out gluten & dairy in 2004. I then also cut out any processed food & chemicals for personal use & cleaning in the house. Would it be ok to do a thread when I don't have a Lyme diagnosis. I wouldn't like people to think I knew what I was about as I am only trying to rid myself of so much misery. My 2 youngest children, now in their 30's never saw me nearly normal & I hope to dance when my baby gets married in 2015 if this improvement continues.
Thanks for the interest & encouragement to keep people informed.
Regards
Maggie Anne
Posted 11/2/2013 1:09 PM (GMT 0)
Thanks LeranLyme
I will have a look now. Thanks for posting about your link. Yes Lyme mimics a lot of different diseases & it depends on the symptoms you present with what title the medics give your ailment.
Have you had a full cure & if yes... how did you treat yourself. It's good to have contact with someone with MS which was really Lyme.
Maggie Anne
Posted 11/2/2013 4:20 PM (GMT 0)
Maggie Anne,
You'd likely be amazed how many of us have not actually received an "real" diagnosis for Lyme. I saw a LLMD that couldn't actually "prove" I had Lyme, but there was absolutely no doubt in his mind that I had not only Lyme, but "most likely every tick-borne disease due to the severity of symptoms and the length of time" I was infected. I'll never forget those words - they scared the daylights out of me!!!

So, yes, please do start a new thread with your experiences!! You can find the button to start a new thread at the bottom or top of each thread, along side of the "post thread" and "print thread" buttons.

And thank you - as I said, we don't get many who have used/are using Cowden's so we don't know much about it.
Posted 11/2/2013 4:28 PM (GMT 0)
hello to all,

i was diagnose with MS 10 years ago, i took interferon for 6 years and i saw a llmd - thank god forfing her and she is treating me with herbs........feel better. i cannot tan under the sun, i had my first mosquito bites in 15 years! does anybody have similar issues?
Posted 11/2/2013 6:31 PM (GMT 0)
Wow. WWJD 40 that is some document. Thanks for posting it. I have only read a little as I find it easier to print & read the pages. Off to my printer now to study it all.
Thanks again
✚ New Topic ✚ Reply