I am adjusting your post so others who have eye problems can read it without eye strain... ok?

Hello everyone!!

I am so glad I found this site. Well I will try to make this short.

This has been the most difficult year of my life. I had a baby 13 months ago. Well this all started years ago.

I was so healthy and active. Well suddenly I kept getting dizzy spells and became very tired all the time. This would come and go.

My neck hurt so bad and my body ached all the time I was seeing a chiropractor regulary. Well that helped short term.

Next thing I know I am getting dizzy all the time escpecially when in stores. I don't know why but the lighting killed me and screwed up my eyesite sooooo bad.

I became pregnant and me and my husband were so excited. I hit 6 months into my pregnancy and boom my life has changed. I spent a couple of days in the hospital each week. I was having none stop contractions. They could find nothing wrong and that I am just going to have a bad pregnancy.

I was put on strict bedrest. I was so sick and scared I had contractions every 2 to 5 minutes for 10 weeks. I did have my little girl a month eary and she only weighed 4 1/2 pounds.

She is beautiful and now 13 months old.

Well after that I just didn't feel good I had blood in my urine in stool every test to try and figure that out. Sooooooo Dizzy and tingling in my limbs. I could barely get out of bed.

Well of course they said you are stresse and have postpartum depression. I kept saying noooooooo this is real I am sick. I went to so many docs!!!!

One said well because of the vision changes and neurological symptoms it sounded like MS!!!

OH my god.......don't tell me this I just went through hell trying to keep my baby alive inside of me. know you tell me this!!

Yes I am very depressed and scared. Well I had an MRI. pefectly normal!!!!

Then the evoked potential test. NORMAL!! No spinal!!

They told me they doubted MS and that I should go talk to someone because I seemed very depressed.

WELL of course I am but that is not what is completely wrong.... I had to have people drive me to appointments because I couldn't even see or drag myself anywhere I was pretty much bed ridden and trying to take care of my daughter...

My family even thought I was nutts. Well I then started having heart problems. Really bad PVC'S and tachycardia. What the!!!!!!

Well A couple docs more!!!! and still no answers . Well they foound some strange things with my heart but nothing life threatening they said I had postural tachycardia syndrome.......

I couldn't think I felt like my brain was all mixed up and couldn't see straight couldn't even watch TV and understand a what was going on in the show.

One day a show about Lyme disease came on with a wonderful Doctor explaining Lyme disease!!!!!

WOW that sounds like me.

Well I then call my doctor and of course he thought I was crazy!!!!! I demanded a test.

Well the western blot came back negative. OH I was sooooo sad. My elisa came back positive.....he said that is a normal thing.

Well I had taped the show on Lyme and decided to call the doctor from the show!! Wow she was the first to listen to me.

Even if this wasn't what I had I finally had a doc listen to me. My husband drove me 200 miles to her and she said it sounded just like Lyme.

Well she did the test through Igenix and the test came back very high positive.

She has had me on 400mg of doxy for 4 months now. I have made some impovement. And just did a week of Flagyl.

She wants me to go on IV. I am so scared and still have doubts in my head that this still could be MS or something else.

AM I just paranoid. Is this Igenix test correct. I just want to feel better.

Also is frequent urination something that LYme can cause?????

I have soooo many floaters in my eyes and so dizzy and off balance all the time.

I can say I am impoving but its sooooo slow and I start feelin better and then boom I am down again!! Is this normal.

Please tell me this is going to get better and should I do the IV treatment. Thanks so much for listening.

Also my doc is a bit concerned about my daughter. What are the odds this had passed on to her. she is getting tested soon and I am soooooo scared.....

Lots of Love, Michelle (MASS)

Sounds like lyme to me. I pee alot. Have for years. Something else common is the heart thing. I was even told I had a heart attack and then they said no. Low sugar is common and caused my lightheadedness among other things. You are lucky to have an llmd that is helping and listening. I would listen to her.

lyme mimics ms alot. As well over 300 diseases. Low b/p is also common and can cause dizziness. Lots of people have to go on iv. Read through the posts and you'll see. Others will come along with info as well.

You have found a wonderful site to get support and answers to many questions. As you may already know, most of us are NOT MD's nor do we claim to be. We just post from our experiences and boy do most of us have them!

Just a note to you, , most of us have a hard time reading the post that have no spaces between them. So, please hit the enter 2x's in between several lines, it does make it easier to read.

Some will come on and give you more info than I am giving you, but I am in a hurry and would like to give you a little of my story.

I am 31 yr old mother (who has lyme) of two girls. Ali (7yrs) and Taryn (15mths) both have lyme. We just started treatment about a month ago.

I believe whole heartedly that I passed it to both my girls either thru breast milk or in utero.

My oldest daughter has symptoms and was diagnosed with "ADHD". I say it with quotations because I believe it is totally lyme induced. (many other mothers have told me their story too) I feel like when we get rid of the spirochetes in her body that she will be a "normal", happy child I once knew about 4 years ago.

My youngest one is not quite walking yet and has had with tubes multiple ear infections and has been sick since she has been on this planet.

Just a little of my story, I know you will get many others. Please come here often and get support and info. It will get better! BUT....sometimes it does get worse before that happens.

Take Care, Amanda

EDIT: wow you guys are fast as I was typing this 3 posts were up!!!! I guess I type slow :P

I'm sure others will be along to help answer your questions better than I can my brain is very mushy lately but I wanted to give you this link for New Members. It has a ton of valuable information on it.....
http://flash.lymenet.org/ubb/Forum1/HTML/026871.html

Igenex is a GREAT lab just to let you know....

I have been on IV for 4 and a half months now, but this is my 3rd try at it. I'm not going to tell you to do it or not but it has been helping me.

Also have you been tested for coinfections?

I have a lot of lightheadedness and dizzyness, bad depth perception, memory problems, unsteadiness....and frequent urination....

But at this point I don't know whats from my Lyme and Babesiosis and Bartonella and whats from my Medications.....

I am gonna break up your post to make it easier to read .

Take Care God Bless
Abbie

quote:

---

Originally posted by Mishelly00:
Hello everyone!! I am so glad I found this site. Well I will try to make this short. This has been the most difficult year of my life. I had a baby 13 months ago. Well this all started years ago.

I was so healthy and active. Well suddenly I kept getting dizzy spells and became very tired all the time. This would come and go. My neck hurt so bad and my body ached all the time I was seeing a chiropractor regulary. Well that helped short term.

Next thing I know I am getting dizzy all the time escpecially when in stores. I don't know why but the lighting killed me and screwed up my eyesite sooooo bad. I became pregnant and me and my husband were so excited. I hit 6 months into my pregnancy and boom my life has changed.

I spent a couple of days in the hospital each week. I was having none stop contractions. They could find nothing wrong and that I am just going to have a bad pregnancy. I was put on strict bedrest. I was so sick and scared I had contractions every 2 to 5 minutes for 10 weeks.

I did have my little girl a month eary and she only weighed 4 1/2 pounds. She is beautiful and now 13 months old.
Well after that I just didn't feel good I had blood in my urine in stool every test to try and figure that out. Sooooooo Dizzy and tingling in my limbs.

I could barely get out of bed. Well of course they said you are stresse and have postpartum depression. I kept saying noooooooo this is real I am sick. I went to so many docs!!!! One said well because of the vision changes and neurological symptoms it sounded like MS!!!

OH my god.......don't tell me this I just went through hell trying to keep my baby alive inside of me. know you tell me this!! Yes I am very depressed and scared. Well I had an MRI. pefectly normal!!!! Then the evoked potential test. NORMAL!! No spinal!! They told me they doubted MS and that I should go talk to someone because I seemed very depressed.

WELL of course I am but that is not what is completely wrong.... I had to have people drive me to appointments because I couldn't even see or drag myself anywhere I was pretty much bed ridden and trying to take care of my daughter... My family even thought I was nutts.

Well I then started having heart problems. Really bad PVC'S and tachycardia. What the!!!!!! Well A couple docs more!!!! and still no answers .

Well they foound some strange things with my heart but nothing life threatening they said I had postural tachycardia syndrome.......

I couldn't think I felt like my brain was all mixed up and couldn't see straight couldn't even watch TV and understand a what was going on in the show.

One day a show about Lyme disease came on with a wonderful Doctor explaining Lyme disease!!!!! WOW that sounds like me. Well I then call my doctor and of course he thought I was crazy!!!!! I demanded a test.

Well the western blot came back negative. OH I was sooooo sad. My elisa came back positive.....he said that is a normal thing.
Well I had taped the show on Lyme and decided to call the doctor from the show!! Wow she was the first to listen to me. Even if this wasn't what I had I finally had a doc listen to me.

My husband drove me 200 miles to her and she said it sounded just like Lyme. Well she did the test through Igenix and the test came back very high positive. She has had me on 400mg of doxy for 4 months now. I have made some impovement. And just did a week of Flagyl. She wants me to go on IV.

I am so scared and still have doubts in my head that this still could be MS or something else. AM I just paranoid. Is this Igenix test correct. I just want to feel better.

Also is frequent urination something that LYme can cause????? I have soooo many floaters in my eyes and so dizzy and off balance all the time. I can say I am impoving but its sooooo slow and I start feelin better and then boom I am down again!! Is this normal.

Please tell me this is going to get better and should I do the IV treatment. Thanks so much for listening.

Also my doc is a bit concerned about my daughter. What are the odds this had passed on to her. she is getting tested soon and I am soooooo scared..... Lots of Love, Michelle (MASS)

---

------------------
"Walk by Faith, Not by Sight"

[This message has been edited by AAmeri21 (edited 30 September 2004).]

In addition, my Western Blots were negative and my ELISA was positive, my Igenex WB's were equivocal. After a trillion docs, I found lymenet and I went to Dr. C earlier this year. He said 'yea, probably Lyme' and I've been on Oral Doxy, IV Claforan & IV Primaxin - so far I've been in treatment about 5 months and I'm still quite ill.

I'm still very lost as to whether this is lyme or not - and I don't know who can really help me. Some days, this really seems like a bad dream.

Our stories are soooo similar - it's scary- email me if you like

You have aligned yourself with a wonderful group of people who will love and support you during your journey. They have been there, done that and even have the T-shirt to prove it

Glad you found a doctor who was willing to LISTEN to you and your symptoms and start treating you.

Stay in touch these folks are OUTSTANDING

What you are talking about is more common than not here on LymeNet. I wanted you to know that, as I've read thousands of posts over the years, that you are not alone.

I so grateful that you have found us. The links for new LymeNet Members given to you above, is a great start for you.

Lookin4answers, is my daughter, and I have LD, also. It's all in the family on this end.

Come back often, well that is when this glitch with Medical clears...it shouldn't be much longer. And, this doesn't happen all that often. But, basically, you've found the best place for truth and support of Lyme Disease that there is on the web.

So, I hope that you are able to come back and respond, by clicking the Post Reply button that is found at the top AND the bottom of the page.

Well, that is if you don't need to Reply w/quote...that button is found on the line next to your name in the icons, but, sometimes it makes it way too long.

And, please hit that Enter key, TWICE every now and again for those of us with eye problems. Thanks,

Oh and welcome to LymeNet!!!

What you are talking about is more common than not here on LymeNet. I wanted you to know that, as I've read thousands of posts over the years, that you are not alone.

I so grateful that you have found us. The links for new LymeNet Members given to you above, is a great start for you.

Lookin4answers, is my daughter, and I have LD, also. It's all in the family on this end.

Come back often, well that is when this glitch with Medical clears...it shouldn't be much longer. And, this doesn't happen all that often. But, basically, you've found the best place for truth and support of Lyme Disease that there is on the web.

So, I hope that you are able to come back and respond, by clicking the Post Reply button that is found at the top AND the bottom of the page.

Well, that is if you don't need to Reply w/quote...that button is found on the line next to your name in the icons, but, sometimes it makes it way too long.

And, please hit that Enter key, TWICE every now and again for those of us with eye problems. Thanks,

Oh and welcome to LymeNet!!!

Sorry you had to find us all but VERY glad you did. I am new to the site (a month or so) Finally got a Lyme diagnosis in May and in treatment since.

Don't let yourself get discouraged - as you have already heard - most of us have been there.

While there are bad times there will also be good ones. I was blessed with the best 3 weeks of my life month before last and while I hit a plateu and headed back down changes in treatment seem to be helping again.

Hang in there - sometimes the light at the end of the tunnel gets dim but if you keep your eye on it - it never leaves.

Feel free to e-mail anytime - I may not always have info for you but I am a very good listener/reader.

Here you are among friends.

Sorry you had to find us all but VERY glad you did. I am new to the site (a month or so) Finally got a Lyme diagnosis in May and in treatment since.

Don't let yourself get discouraged - as you have already heard - most of us have been there.

While there are bad times there will also be good ones. I was blessed with the best 3 weeks of my life month before last and while I hit a plateu and headed back down changes in treatment seem to be helping again.

Hang in there - sometimes the light at the end of the tunnel gets dim but if you keep your eye on it - it never leaves.

Feel free to e-mail anytime - I may not always have info for you but I am a very good listener/reader.

Here you are among friends.

Sorry you had to find us all but VERY glad you did. I am new to the site (a month or so) Finally got a Lyme diagnosis in May and in treatment since.

Don't let yourself get discouraged - as you have already heard - most of us have been there.

While there are bad times there will also be good ones. I was blessed with the best 3 weeks of my life month before last and while I hit a plateu and headed back down changes in treatment seem to be helping again.

Hang in there - sometimes the light at the end of the tunnel gets dim but if you keep your eye on it - it never leaves.

Feel free to e-mail anytime - I may not always have info for you but I am a very good listener/reader.

Here you are among friends.

Anytime you have neurological problems, as you explained below I would recommend finding a good neurologist to rule out other things. You should have a full neuro panel (blood) done. I believe in strong testing (over testing) including spinal taps especially when it comes to Lyme disease. Spinal taps can yield other things to rule out as well.

One of the problems today is nobody wants to run any blood tests especially if you mention Lyme disease, then the walls start going up.

You mention an MRI, I will assume you have both head/neck. In addition, a SPECT scan can be helpfull. Just get a good doctor that can read them besides the radiologist--- interpretation is everything.

In regards to Igenix and testing in general, you can run Lyme Disease tests every week and you will probably get different results all the time. It is the nature of the beast. We do not have a test today that is 100% reliable. The C6 Peptide test is a step above the Western Blot. That's about it.

LD is not a monolithic illness. One can test positive for LD and have no symptoms It depends on your immune system and other factors.

Point being, if you rule out all other possibilities including neurology, rheumatology, tick co-infections and other infectious disease such as viral, fungal, parasitic, bacteria and if your coming up short (negative), looking at things like LD and other chronic illness make a lot of sense.

The treatment of Lyme Disease is based on clinical symptoms, not blood testing. IV and/or long term oral antibiotics should be a decision based on covering all differential diagnosis and your current severity level as well as length of time being sick.

The decision of treatment should not be confusion or nerve racking, but a comfortable one as difficult as this sound.

I wanted to point out to Marlee, with the one post so far about the neuro evaluation: this poster had a MRI and evoked potential, and given the diagnosis of MS at one point. Sounds like she has already been to a neurologist.

Poster ( uh, I forgot your name) Its so very common for lyme to spring up after a surgery, illness, injury, pregnancy, etc. Pregnancy alone can suppress so much in the human body then WHAM.

No, if your MRI is normal, you do not have MS. Even if it WAS abnormal, there are plenty of people that have had lesions that really were not MS, plenty

of people that were in wheelchairs for life, and it really ended up being lyme and they are much better now. My own mother was diagnosed with MS WITH lesions on her brain-oops, wasnt MS, but it surely was lyme disease.

It IS normal, the symptoms that you are experiencing. Not everyone gets the same exact symptoms as there are over 300 different strains of borrelia and 100 in the US.

You mentioned blood in the urine. Have you been checked for babesiosis? it wouldnt bother to have a treatment round for that even if you ARE negative for it. testing means nothing, the sick patient does.

Four months is not a very long time to treat this infection that sequesters itself everywhere. You keep chugging and reading and you WILL get there and get back on with your life.

Dont give up. Some patients get on treatment for four-five months and wonder what is wrong with them. Duh, lyme.

Good luck to you. Keep coming here.

Welcome to Lymenet.

It sounds like lyme to me too, I'm glad you are in treatment. It takes a while to see improvement, so hang in there.

And as someone said above, get tested/treated for co-infections.

Good luck to you, and let us know how you and your child are doing.

You have done the right thing by being your own advocate. I would definitely put my trust in a lyme literate physician and what they recommend. You have a little one that needs her Mommy and you want to have the energy to chase her around when she hits the terrible twos!

Welcome to Lymenet!

Your account is heartrending to read because you have had so many major health and life upheavals to contend with in the past couple of years.

You said:

Well this all started years ago. I was so healthy and active. Well suddenly I kept getting dizzy spells and became very tired all the time.

My neck hurt so bad and my body ached all the time

a bad pregnancy. I was put on strict bedrest.

I did have my little girl a month early and she only weighed 4 and 1/2 pounds.

Well after that I just didn't feel good I had blood in my urine in stool every test to try and figure that out.

Sooooooo Dizzy and tingling in my limbs. I could barely get out of bed

I kept saying noooooooo this is real I am sick. I went to so many docs!!!!

One said well because of the vision changes and neurological symptoms it sounded like MS!!!

OH my god.......don't tell me this I just went through hell trying to keep my baby alive inside of me. know you tell me this!!

I had to have people drive me to appointments because I couldn't even see or drag myself anywhere I was pretty much bed ridden and trying to take care of my daughter..

Well I then started having heart problems. Really bad PVC'S and tachycardia.

I couldn't think I felt like my brain was all mixed up and couldn't see straight couldn't even watch TV and understand a what was going on in the show.

My elisa came back positive....

I finally had a doc listen to me. My husband drove me 200 miles to her and she said it sounded just like Lyme.

Well she did the test through Igenix and the test came back very high positive.

She has had me on 400mg of doxy for 4 months now.

I have made some impovement.

Wow. What a journey!

You have my utmost respect, Mishelly. And if you're feeling sad or scared there are caring people here at Lymenet to share that with. You're entitled!

I just want you to be VERY PROUD of yourself for keeping on in the face of so many obstacles. I'm impressed with your courage and fortitude under duress.

Juggling pregancy, a premature birth and early motherhood while being ill with scary and baffling symptoms that resist diagnosis must be unbelieveably stressful.

And you did it!

Congratulations on hanging in there in spite of it all and having a now 13 month old beautiful baby girl. I wish I were there to give you a big hug and kiss the top of her adorable little head.

And you've also gotten yourself into treatment!!

In my humble opinion,

The only medical advice I would share is to:

1)keep up with your LLMD

2) See a Neuro LLMD who can knowledgeably address your concerns about MS. I can email the name and phone of one in CT. He can also look into possible co-infections or neuro conditions if needed.

3) See Dr. J in CT for your daughter. He is the best pediatric LLMD around. Again, I can email you the info.

4) Keep us posted!!!

Hugs and Prayers,
andie

Well just to let the person know I have been to 2 neuroligists and they did a lot of blood, the MRI, evoked potential and they pretty much told me I was Nutts. I was starting to think I was.

I also saw an ENT Dr. 2 cardioligists and the cardioligist told me I have postural tachycardia syndrome.....LOL. I have been to an eye specialist in Boston. I have an appointment in OCT. to see a Neuro-optimoligist because they did find evidence that I had earlier had inflamaion that had caused a little damage but nothing that was active at the time....

So they said everything looked pretty normal but want to check more due to the fact that I have blurred vision, floaters and eye pain but from things that I have read it does not seem to be just me with this problem.

I even went to a infectious disease doc who did tons of blood work for all different kinds of diseases. The only thing that came back elevated was the one that shows inflamation in the body or something like that.

He suspected Lyme but would not treat me without a full proof test. My Elisa was positive but the western blot was not.
So I found the doctor that I am seeing now she tested me through Igenix and it was VERY positive. So sometimes I don't know what to believe. But I am praying this is the answer and that she can help me.

I also wanted to add that if you were told you have POTS Syndrome ( that posteral tachacardyia ) please HAVE that treated also.

Lyme commonly causes this , you can do a search on google and bring up tons of stuff. It would be under autonomic nervous system dsyfunction.

alot of lymmies are walking around dizzy, unable to stand up, etc and thinking its just the lyme.. well, correct

it is the lyme that CAUSED that but it does need treated.

I am thinking you received a tilt table test from the cardio to get that dianognis or somthign similiar? The results on that dont lie, and just like
yeast

isses that need addressed during lyme treatment, this also will need to be at least for symptom reduction.

ON the feeling drunk part.. uh huh I can relate. I was drunk for 5 months straight with vertigo and severe, severe head pain constantly.

In this surreal world of newly diagnosed Lyme disease, it is NORMAL to be terrified, angry, feel alone, question the diagnosis, question the treatment, question the prognosis and wonder if you will ever beat this. You will have times when you feel all these. Feel free to vent about it here...don't let anyone make you feel badly for these reactions to a terrifying situation.

You are also not alone....and not crazy!

People here are great...they can help remind you that you will get better when you can't see the light at the end of the tunnel...just hold on and come here often.
Its a soft place to fall when your world is falling apart.

Also, a very good book is, "Coping With Lyme Disease" by Denise Lang. Not that you have time or even the energy to read right now, but if you can look at it here and there it may ease your mind a bit. It helped me and continues to be a source of comfort in these early stages of treatment.

Remember: THE LIGHT WILL DAWN!

I am a 43 year old male and have had a lot of the problems you note and have been for all the tests (nero, ct, mri, gastro, eye,reflux, sleep apnea, etc. Everything normal. I also had sudden onset RA (arthritis)and could no longer walk without tears. No one believed I had Lyme. My original family doctor did a lyme test which came back negative, six doctors refused to even run the test.

I found a LLMD in NC who ran the test through igenix (very positive).

11 months later.

After 5 - 6 months of oral tratement 2000 mg Augminten XR and Doxy (example only as meds change every 30 days), the pain went away. Most other issues had cleared up, then about a month ago I started having the vision problems again and the arthritis is starting up again.

I am now waiting to go on IV tratment.

Good luck to you, make sure you have a LLMD who puts you on high enough doses to kill the lyme terriorist that lives in your cells and make sure that you rule out all other possiblities (other than Lyme) as the cause of your problems.

Feel Better.