HealingWell
Search Close Search
☰

Lyme disease or MS?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/3/2011 12:12 AM (GMT 0)
I am worried about my health. I know something is differrent. Back in July I had a reaction to a bite on my leg and soon after that I had some strange things happen to me. I had two different episodes of extreme neck pain and leg pain to the point of passing out. My husband was home and he is a paramedic and he said he thought I had a small seizer. Since that episodes I have had a few times of strange nerves sensations that go through my body. Extreme behind the elbow pain, ear pain, hip pain, leg pain, general all over body pain. I remember one time I had this feeling of tightness around my waist, like a paralize feeling. But it went away within a few minutes.

Itching on the skin on the left side of my neck, and the newest symptoms a strange overcast of my vision on my left side. I also had an episode of four days straight I could not go to the bathroom, with drinking fiber drink and mylalax. I was scared and thought I had colon cancer , Had a colonoscopy and all is fine.

I have always had strange sweating issues. To the point things would be soaking wet that I touch. This has gone on for years. I had back surgery after the birth of my daughter in 2000 and I have always wondered if it was from the fact that my doctor tremendously yelled at the nurses at the hospital that they gave me the epideral in my back way into my labor. I remember he was furious at them.

So, since all of these symptoms have been happening. I went to a neuro, mri done, they found a small lesion on the right side of my brain. It was two small to say whether it was related to demyelination. Mri of spine and neck negative of lesions. Emg done small nerve lesion found of left side of my arm.

Started having extreme hip pain, had a mri done. they found two cysts within my bones , but they do not think this could cause pain. I am really sick of going to each doctor , One day I have pain on one part of my body , and then another day another part.

The first neuro I saw after the mri of brain, told me it could be early Ms , the other neuro, told me that MS people do not have pain. He said that he has been a neuro for 30 years and people with MS do not have pain. So, then I started thinking maybe I have fibromyagia I am just sick of this. Now I have to go to the eye doctor and see what is going on with my left eye.

The medical bills are really starting to effect us, but I am scared to not go and see what is wrong with me , in fear that something is being missed. I would love any advice any has. and what step to take next. Do you think it could be MS ? Some days I feel like my big toe is immerged in hot water and I also have numbness and tingling in my legs arms and back.

I am 40 years old with three children at home. I just want to feel better. Also , my symptoms get worse right before my menstratution. My husband has been worried about me , which makes him unable to sleep , he said I wake him up with twiching of my legs at night. I feel like I sleep okay when I wake up in the morning.

Thank you for listening. I really appreciate it.
Posted 3/3/2011 12:15 AM (GMT 0)

  Just to add I was tested for Lyme disease through blood work with my family physician. It came back negative.

 I went to the eye doctor to get the strange vision looked at in my left eye. The nurse first shined a light into my eyes on the eye that has been bothering me I saw blackness where the bright light was. I did see some of the light around the blackness that I saw. The eye doctor that did the exam , said that he may have seen slight inflammation of the optic nerve on this eye. I am going back on March 7 to have a visual aid test done. He actually talked to me about MS and told me that there are many treatments for it. He himself has MS . I told him how I have been experiencing all the symptoms and how the one neuro told me that MS does not cause pain. He immediately stopped me in my sentence and said that MS does cause pain.

 So, shortly after they shined the light in my eyes I began having involuntary twitches of my legs. He noticed them and I was pretty overwhelmed with him telling me that he may of seen inflammation on my optic nerve, plus I figured maybe it was just my nerves, after him talking to me about MS. Well, the twitches that started after the eye exam have not stopped and actually are sometimes my whole body now. There is no pain with them, just a uncontrollable twitch.

 Could this of been caused by the light shined in my left eye if my optic nerve was inflammed? Will they go away? I called today to get another MRI done on my brain? I really don't understand this. I am scared that these involuntary twitches will not  get better. I do not go back to the neuro until March 17 Should I wait that long?

Thank you for your help.

Posted 3/3/2011 12:44 AM (GMT 0)
Hello haileys letter, wow I'm so sorry to hear about everything you're going through! It's hard when you have sooo many different symptoms going on and no one knows what to do!!!!

I have or have had all the same symptoms as you're describing. Lyme lesions of the brain look the same on MRI as MS lesions do. Lyme disease messes with the cranial nerves that affect every part of the body. Especially the whole digestive tract, heart, and peripheral nerves. Brain inflammation in the back of your head (the vision center) gives all kind of different vision problems.

Lyme disease affects your whole body. It specifically screws with connective tissue; joints, nerves, etc.

More than likely, the test your doctor did for Lyme, was not one of the newer test used now. Please find a Lyme Literate MD. They will be able to fit all these pieces together for you.

Read up on all the "new member" posts at the very top. They will help greatly.
Keep us up to date with whats happening with you.
God bless and many hugs,
Lisa
Posted 3/3/2011 12:48 AM (GMT 0)
Welcome to the Board! A lot of what you have explained I have been through including a blurry left eye at the moment. I have lyme disease and went undiagnosed for over 3 years because of testing "negative" every time except thru Igenex Labs, which is a lab which specializes in lyme in California. The important thing with lyme is what test did they run and did you get a copy of your results. Lyme tests are extremely unreliable and most doctors do no know that the diagnoses must be clinical and the lab reporting process is just for surveillance purposes. You must get a copy of the results. If a western blot was run, post the results here and you can get opinions or you can get the interpretation chart. If just an elisa was run, demand a western blot. Elisa is even more unreliable. Lyme is so so hard to detect. I too have lesions on brain on right side which is consistent with blurryness in left eye and neuraglia pain on left side of my face. However the neuro I went too admitted he knew little about lyme but told me didn't look like ms. If you continue to have twitches and constipation, try over the counter magnesium which really helps with both. I too have had elbow tendonitis (gone now), hip pain (on heating pad right now), knee pain (gone now) and stabbing and migrating pains throughout my body. I get numbness in parts of my body and continue to get chills run down parts. I've been on antibiotics for almost 2 years. Where do you live? The best doctors to see are LLMDs. Avoid infectious disease drs. I didn't heed this advice and wasted a year of treatment with infectious disease dr. Best of luck to you. Feel free to email me.
Posted 3/4/2011 12:03 AM (GMT 0)
Hi Haileys and welcome!

I can not tell you how many people I have come across not only on this forum but other forums as well who were diagnosed with MS and years later found out they had lyme.  I personally don't believe in the MS diagnosis as well as other "labels" but that's me.. 

You may want to google Dr. Lida Mattman and Whittaker (I used to have an article that talked about how these doctors tested a bunch of MS patients and found lyme bacteria in every one of them).   I can't find that article at the moment but did find this.

http://www.mcs-international.org/articles/001_marjorie_teitjen_1.html

http://www.rense.com/general43/kly.htm

Anyway, I hope you find a good doctor and get help.  I would read the Detoxing Section in the newbie thread and start detoxing to get those poisons out of your body.

  

Hoping you feel better and that you get some answers.  Are you going to get tested by IgeneX?   You mentioned you were tested and if it was by Labcorp or Quest, those tests are totally unreliable and for good reason (they don't use human blood plus more reasons).   IgeneX is probably the most accurate lab we have in the U.S.

As far as your eye, go to a specialist and ask them if they see spirochetes in your eyes.   They saw them in my eye so I know it's very possible to see them depending on the eye doctor.   Don't settle for one doctor, go to as many as you can...  You really need to be careful when it comes to your sight.. 

Hang in there and keep us updated okay?

Denise

Posted 3/4/2011 12:22 AM (GMT 0)
Ouch. I believe I have MS. It hurts when someone tells me the disease I work so hard to fight doesn't exist, but that's just me.

I did the igenex testing. I was negative and it cost me a pretty penny.
Posted 3/4/2011 1:16 AM (GMT 0)
Hi Gretchen,

I'm not trying to tell you that you don't have MS... I personally don't believe in that diagnosis, that's just me..   I have 2 friends who tell me they have MS and the last thing they want to hear is about lyme.  So I keep my mouth shut.  One is in a wheelchair and when I sit with them, I see all the symptoms of lyme..  And I feel so bad for them..  But there is nothing I can do..  It's up to them...

Yes, IgeneX is not 100% accurate..  No test is.  As you probably know lyme is a clinical diagnosis..  Everyone's symptoms are different.  But lyme is caused by real bacteria, no one knows what causes MS symptoms.. 

I go by the amount of people that join this forum and say they were first diagnosed with either MS, fibro, lupus, and the list goes on only to find out they have lyme as well as scientific research.. 

I truly wish you well and that you get better.

Hang in there,

Denise

Posted 3/4/2011 1:29 AM (GMT 0)
Wow. Ok. OUCH!!!
Posted 3/4/2011 6:50 AM (GMT 0)
Please respect other peoples diagnosis. It is better to keep those opinions to yourself because we have all fought hard to get a diagnosis. I have talked to Gretchen many times and her symptoms are very different from ours.
Posted 3/4/2011 11:24 AM (GMT 0)
Hi CG,

This post is not about Gretchen, it's about giving Hailey's Letter information since she/he is the one who started this thread.   I don't jump over to the MS forum and post there because that's none of my business not to mention I respect those member's beliefs.

Of course I respect Gretchen's diagnosis, that has nothing to do with my own personal opinions based on my own research and other doctor's research.  

I also fought hard to get a diagnosis when I was sick and was given all sorts of "labels" but I didn't buy into them because something didn't sit right with me after I did my own research.

Sometimes people need to be their own advocates.  Just my opinion.

Denise

Posted 3/4/2011 2:02 PM (GMT 0)
Deejavu,

You are right. I should have kept my mouth shut. I just came over here to see if Hailey's letter was getting lots of good responses since I recommended she post here. I believe in chronic lyme. It's clear you don't believe in MS. That's fine. I am not sure how telling me that MS doesn't exist is respectful, but we can agree to disagree on that point.

At this point, I do believe Hailey's letter has learned to be her own advocate. I will respect whatever she and her doctors decide.
Posted 3/4/2011 2:29 PM (GMT 0)
Hailey, I am sorry you are going through so much. I 45 and have many of the same problems you have. I have been searching for many years and seeing many different doctor for the answers. I was labeled with fibromyalgia and possible rheumatoid arthritis. I suffer with terrible all over body pain, eye inflammation and constipation just like you and it always gets worse around my period. My endocrinologist found I had severe reactive hypoglycemia and suspected possible insulin resistance along with possible hypothyroid. Finding these conditions doesn't necessarily mean lyme but when your husband and son have the exact same symptoms and conditions the doctor thinks a little differently. My search finally brought us to a lyme literate doctor with approval from our endocrinologist. She wanted us to see a disease specialist but thought lyme would be a good place to start. Lyme can cause all of these conditions and more. My husband and I both have lyme disease and our 19 year old stubborn son, that is another story. We were tested many times with inconclusive results. Our lyme doctor put us on antibiotics to see if this would help our immune system to wake up. He tested us again after about a month or two if taking doxycycline. My husband came back positive and I was still inconclusive. I stayed on the antibiotics for another 2 months and was tested again. My first and second test showed one marker on PCR testing and that was marker 41. My 3rd test came back with 4 markers positive and a fifth marker that was very close to positive. You need to have 5 positive markers to be considered positive by the CDC and to have insurance pay for I.V. antibiotic treatment. My husband started I.V. treatment right after is positive test came back. I was in so much pain that I decided to do the treatment anyway and pay out of pocket. My hope was that after a few weeks I could retest and it would show positive. I retested after a few weeks and I came up with less markers then I had previously. I noticed improvement after the first few weeks of I.V. antibiotics and decided to continue with treatment regardless of testing results. I have been on I.V. antibiotics for 1 month now and have improvement but, it is very slow. I just recently started my second month of I.V. treatment and was told that after the second month you really notice a difference. So, I am hopeful.
Lyme is a terrible disease that is truly ignored by the medical community and insurance. Testing is very inaccurate and everyone suffers so differently making it very difficult to diagnose. I may never test positive in their eyes and it really doesn't matter. I would rather try months of antibiotics any day over taking prescription medications to mask my symptoms. Listen to what your body is telling you. You more then likely suffer with systemic inflammation like me. Lyme and other bacterias are known to cause this problem.

You can e-mail me if you want more information about were to go to get diagnosed or more about my symptoms so you can compare. I would be glad to help you.
From someone who feels your pain.
Posted 3/4/2011 2:35 PM (GMT 0)
I forgot to mention. I wouldn't run out and get tested through IGENEX unless you feel you can spend the money. Many lyme literate doctors test through IGENEX and it may be cheaper to get testing done through them. My doctor tested me through MDL labs in New Jersey and they are good also. We decided to have our son tested through IGENEX to see if anything different shows up. Our lyme literate doctor takes insurance and also will treat you if insurance won't pay for treatment. He believes chronic lyme can only be addressed through long term treatment of antibiotics. Good Luck
Posted 3/4/2011 6:13 PM (GMT 0)
Hi Hailey's Letter :)

I'm reponding because Igenix will send you out a free testing kit you take to your doctors, but you pay for the examination of your blood, but it's well worth it! I spent $900 for my two tests and finally after 5 years I was told I have lyme's BUT thanks to you, I'm working my LLMD and using Rocephin weekly which has given me back my quality of life.

Don't stop searching and get more testing done, please. Someone told me two years ago to get check for Lyme's and I ignored it, I kick myself now! How much further along could I have been by now. But could of, should of, would of, I have to let go of that.

I'm still taking 500mg of Rocephin a week and now added in Rifampin daily.

Hugs,

Linda

Posted 3/5/2011 2:11 AM (GMT 0)
 

  Thank you everyone. I appreciate the good thoughts. Just a quick update since I am very tired. I have been in the hospital the last day and a half.

My husband ended up taken me to the emergency room since the involuntarty twitches turned into full body jerks. It was really bad.  So, in the emergency room, I had two doctors do exams and me and they told my husband and I  that they were 99.9% sure that it was MS. I was then admitted and given Ativan to stop the body jerks. They continued through the night along with double vision and lost of some central vision on my left side. Woke up this morning and the body jerks were still there.  They did go away through the day. I have two different neurologist come in and do exams on me. I was able to do exams well. I did have a momentary problem walking on my toes and heels, but it was more of a "my brain taking a minute to registers to do it."

 Another MRI done  With and Without contrast and it was clear. The neurologist feels I DO NOT have MS. He  feels that my nerves are over reacting. and told me to take 1000 mil of Vitamin D a day. He reccommended Lexopro and Ativan if my nerves misfire again.  I am very glad that the test came back well. In the back of my mind I am wondering really what happened with me and everything that I have been going through.

 I am home now and will follow up with my family doctor? Any thoughts Thank you for your time.

Posted 3/5/2011 6:28 PM (GMT 0)
HI Hailey's letter!
Welcome to our forum! Thanks for stopping by! I would like to encourage you to seek out a Lyme-literate medical doctor (LLMD) and be evaluated.

I have experienced small seizures, and what I can only describe as full body muscle spasms - both were & are quite scary to me!! The funny part is that I can have some pretty serious muscle spasms and have even managed to give myself a black eye - not once but three times!!! shocked giggle!! Even Hubby was laughing at me by the third time!

It would be a good thing if you looked at a full symptom list for Lyme & the co-infections.A very detailed one can be found in the thread at the top of the forum titled, "New to Lyme?...Start here!". It's the third post down -( giggle - I've been telling people that the detox instructions were the third one down - sorry all!!)

You will also find lots of really great info about Lyme Disease and the co-infections there as well as some very informative links! And don't forget to use the search function to help you find more specific answers.

Feel free to email me if you have any questions that you are not finding answers for.

I hope this helps a bit!
Trav
Posted 3/7/2011 2:14 PM (GMT 0)
Hi Hailey's letter,

You are a strong person I tell ya! You've been through a lot! I would seek a LLMD too, since we know about Hailey and your dog. Maybe a child and an adult respond differently to bacteria or co infections.

I'm glad to see you are recovering at home!

Hugs,

Linda

✚ New Topic ✚ Reply