MS or Lyme-this is for Pam

[Buttons2]

Pam I thought I'd give you your own thread here so it doesn't get buried in Erin's-hope that's OK!

I had to grin when I read your statement about not being able to recall why you went to a doctor when had the rash. It sounded so much like my own story! I hadn't gone to a doctor in over 7 yrs when I was bitten by a spider & the bite was bothering me to the point of finally relenting & seeing a doctor.She was married to a spider expert (ha! recently found out he was no such thing!), she's also deceased or I'd probably sue her! this was 9 yrs ago! and I still have a visable bug bite on my foot!

Because I had 2 family members die of brain tumors I was approved for a brain MRI when I suddenly began having myoclonic jerks. Nobody @ the clinic had ever seen such a thing! The MRI showed 2 lesions but because of my age (late 40's @ the time),the report said of no significance,whatever that's supposed to mean. So I had more tests & saw a couple of neuros & one said possible MS & the other said he suspected Creutzfeld jacobs (mad cow disease! fatal!)

So far you have mentioned a bulls eye rash,you live in a highly epidemic area for Lyme,you've had some memory lapse.......seems to me that you should consider getting tested again! And you mentioned discussing this with your neuro.....now a word of caution about that! If you read our stories you will notice that any doctor not aware of Lyme & how to treat it will get this "closed" look on their face the second you mention Lyme disease! they have been known to turn their back & run out the door! Or suggest you see a shrink! Here-take some hormone pills! You must need anxiety pills! You're nuts! You already have a diagnosis-except it! Yada yada,you get the picture-or you will as soon as you bring this up with your neuro!:rolleyes:

the good news is that you have doctor's in your area that can actually treat you! And having it for 25 yrs is not uncommon! The bugs don't care,they can move around & have a gay old time for the rest of your life!

I'm just trying to prepare you for what you're in for......

Can we assume you have been researching the symptoms of Lyme & making comparisons to your own life? And if you had children since your rash was so many years ago,do any of your children have any symptoms? Lyme can be passed in vitro or through breast milk.

Good luck to you & hope you'll ask more questions,the tests as you know aren't reliable so I'd concentrate on checking off symptoms from the past 25 years & go from there.

Buttons

[Matthew's Mom]

Buttons,
very heavy thread:eek:

I've haven't researched in regards to my own symptoms, just since my brother was diagnosed did alittle reading and read some posts here.

I have had two sons since the bullseye rash. have a daughter before the rash. My daughter very healthy, sons different story. I know my youngest son began neuro problems after using lindane on him. But he did have delayed speech and walking before that, nothing dr concerned about. my oldest son was in sp. education and also had speech problems etc.

I will talk to my brother, the doctor he saw was great, not a neuro but familiar with lyme.

Thanks for posting this, I wonder.............

Pam

[Buttons2]

Didn't realize you have a brother with Lyme! How long ago was he diagnosed? How is he doing?

Well easy to notice I have Lyme brain, I suppose anyone with a Matthew for a son has children-duh!

Anyway I'm now wondering if Matthew has myoclonus? I'm asking cause of another Matthew mom on a movement disorder site that I'm on.....might just be a coincidence!

Are you on steroids? If so that might be giving you much more energy than the average Lymie! In other words: masking symptoms.

Glad you've joined this forum cause perhaps we can learn about your brother & share info.

And I find it interesting that daughter is healthy but your sons both have health issues.....how old are they?

Hopefully someone will join in here & provide the best links for symptom list. I know some are different than others. Myoclonus for instance isn't always listed,but tremors are. (there is a big difference).

I'd say you've got some things to contemplate now!
Buttons

[tangye5]

The Neuro. docs. stay as far from lyme as possible. You will be diagnosed with anything but Borrelia (Lyme). Get your blood to IGENEx Lab stat. I am on my 27th month of IV therapy and am now living a normal life. Long term IV therapy has saved my life. I suffered with Borrelia and Babesia for 17 years and finally went to a Lyme Literate doctor. Tangye5

[Matthew's Mom]

Buttons,
my brother was diagnosed app. two months ago (i'm not sure exact time) just that he called me to tell me all that went on.

The doctor put him on oral antiobiotic immediately even before test results came back. He felt very sick for a couple of weeks, weakness, fever, sore throat, and developed some arthritis like pain and swelling at rash site.

He feels great now, at least thats what he tells me.

Matthew is diagnosed with Tourettes Syndrome and other disorders such as ADD and PANDA's.

Anytime he is exposed to a medication etc his tics get worse. He now has had a cough for a month and today am taking him back to the pediatrician to see whats going on. Took him a couple of weeks ago and they felt an upper respitory thing, but it should have gotten better by now i would think.

Matthew is 17 years old and Hank my oldest son is 25.

Matthew has had MANY abnormal EEG's , but i know these due to his exposure to lindane that i used on him at age 7 for headlice. Thats when his neuro symptoms began.

[lymebytes]

Hi Pam. Although only about 50% of people who have Lyme ever get a rash, a bulls-eye rash is a definite sign of Lyme. The rash alone merits treatment.

Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

To see the cognitive and neuropsychiatric symptoms of Lyme in children and adults, see Columbia University's Overview of Neuropsychiatric Lyme Disease at http://www.columbia-lyme.org/flatp/lymeoverview.html

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment. No test is completely reliable, and results can vary by lab.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. As someone who has had several co-infections, I know firsthand how important it is to know if they are present. Was your brother tested for these?

Sometimes people can keep an infection at bay until their immune system becomes stressed in some way (illness, accident, divorce, etc.). Then symptoms emerge. The sooner the infection is treated, the better.

If you would like a doctor recommendation, let me know.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses at http://www.ilads.org/burrascano_0905.html He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

[Buttons2]

first let me welcome our new BT member,tangye5,hope we will get to know you better & that you see steady improvement!

Pam, I just googled lindane,my first question of course is if a tick could have been buried in your son's head? I had no clue about this stuff,my mom put something on me when I was a little girl,she also cut my hair all off! I might have used this stuff on my own sons! Dark,very smelly stuff as I recall?

Now, you just might want to do some reading! I googled Lyme & tourettes,there are 21,800 sites for info!

Your brother was fortunate,he had the bulls eye & got treatment immediately. He does have a good chance of being cured. But I also urge him to find out about any possible co-infections.

Can you see his doctor? You seem to be in a very highly epidemic area if he has 3 (or was it 2?) co-workers with Lyme! :eek:

I'm now gonna suggest you consider getting your sons tested.....can't do any harm & who knows it just might be an answer you never even considered all these years! Much stranger things have happened in the Lyme community. People diagnosed with ALS have been treated for Lyme & not only survived but finally had the death sentence thrown out along with the wheelchair!

I know we come across as being on a crusade sometimes.....but we are! We need to spread the word,get people educated & pushing for an accurate test & rapid cure.

Buttons

[Matthew's Mom]

lymebytes and buttons,
My gosh, on the link you posted lymebytes, it even shows the brain MRI with the lesions like in MS. thats how my definite diagnosis came due to lesions and symptoms.

I sent link to my brother to read and am calling him ASAP to see his dr.

I am overwhelmed right now.

Thinking MS and lyme, I don't know.

Pam

[lymebytes]

Hi Pam. Lyme can cause MS-type lesions in some people.

If I can help further, let me know okay?

[Buttons2]

Pam I know of a lady near Seattle that has both Lyme & MS. WA state has a very high rate of MS......,makes me wonder!

good luck to you, and I realize how much all this info is overwhelming to you but the more you learn the better off in the long run....

[Erin]

I think when a person has MS and Lyme, it's because the Lyme was not treated in time, and that it might be one of the several things that I think causes MS.

I think that once you pass a certain length of time with untreated neurological lyme, you end up with full blown MS. I have yet to find any medical doctor's to confirm that, but I think it could be another theory as to what causes MS.

[Sonsie]

MRIs are not considered useful in diagnosing/assessing Lyme disease, per LLMDs. SPECT scans are -- they reveal how much of the brain is oxygen poor (due to spirochetes), what parts are (they usually map perfectly to the patient's symptoms and neurological deficits), and so forth. The problem (as usual) is that it takes a Lyme-literate radiologist to read the scans correctly.

I know quite a few people whose docs sent them off for MRIs, then diagnosed or not with MS. Once they finally got their LD diagnosis, the "MS symptoms" improved.