update

[speechgeek]

I thought I would stop by and give an update.

Many of you may remember that a joined the forum as a limbo lander back in December with complaints of had blurred vision, visual tracking problems, ear pain,  balance problems and a diagnosis of peripheral neuropathy in 3 out of 4 limbs. I had numbness, tingling, twitches, jerks and fasciculation's in every inch of my body. As many as a 100 an hour. Burning and tingling in my face….The symptom list could go on and on. I lost the ability to stand for more than 15 seconds, walk more than a few feet, write, and type. etc.   By December my husband had to take over running the household. Going to work was all I was able to do and I wasn't doing that well.  By January I thought for sure my future was that of a wheel chair and unemployment.

After many doctor appointments....neurologist, otolaryngologist, ophthalmologists, rheumatologist, infectious disease, emgs, MRIs, thousands of dollars in blood work and a wasted trip to Johns Hopkins.  nothing

The interesting thing is that last June I was doing yard work with a friend and I had been bitten by a tick. I removed the tick and put it in a bag.  I NEVER had a bulls eye rash. The site remained red for 2 weeks. I took my tick to the doctor and he said it was just irritated. He took my tick and stuck it in my chart. SO by the fall I am being sent from doctor to doctor.... my PCP feels that it may be MS..... the Neurologist says he can’t rule out ALS......Rheumatologist says it's vit D deficiency... Johns Hopkins said chronic fatigue or maybe fibro......infectious disease said it couldn't  be Lyme because I am not positive enough so it must be EBV/CMV...

.Because I have another family member that has been battling Lyme for 10 years I knew the ELISA was **** and that it had a high false negative rate and that the western blot also has a high false negative rate...so I started screaming about the tick....and I screamed and screamed and yelled and begged and cried......

I Had band 23 come back positive…Lyme enough… I was put on 1500 mg of amox in January and then increased to 3000 mg in March. In June (the one year anniversary of my bite) I was feeling great.. even contemplating going off meds.  I had a GI reactions to my treatment and I had to stop for 15 days. I was fine with that because I was ready. Within 48 hours my symptoms returned. I woke in the night with shooting pain down both my legs… balance problems, pain behind my eyes, blurred vision, visual tracking and those annoying twitches are back. A fatigue that will not stop…

I really thought I had this thing beat…. My Lyme doctor has put me on 600 mg per day of cefdinir. I have been on it for 11 days and I’m still having a hard time.  Guess what… my vitamin D deficiency is back. SO for all those that think Lyme is easy to diagnose and easy to treat you couldn’t be more wrong. If you get a chance please look at the following video http://www.myspace.com/southshorelymesupport. It was sent to me from Stacey and it describes my experience with this disease.

So I am trying to mentally and physically re-group. I still lurk around but I haven’t had the energy to post or respond to e-mails for a long time now. I hope all is well with everyone and I do appreciate this soft place to land during my struggle with my treatment. I still can not bring myself to join one of those crazy lyme forums....

Rebeccah

[speechgeek]

Kitty


My PCP is wonderful doc and admits that he knows very little about lyme disease and has learned a lot from me and has spent time researching. He has even made different decisions recently in treatment of several patients with known and unknown tick bites  I bring him stacks of literature at each visit and tell him he can read it or chuck it. Let's just say my chart is ridculous in size. He keeps the stuff in there so he knows where it is.

If you can see a lyme literate doc I would. Most of them will work closely with your PCP in terms of ordering tests to reduce in convient travel etc. Especially of your  PCP is supportive. That way your PCP can bill your insurence.

My Lyme western blot  IGM just says Negative f ("f "meaning footnote) the footnote  says Band 23 present. You need to ask your doc if you had any bands present. He may not have run or gotten the results in terms of Igg and Igm.

When my nuerologist ran the test the lab only sent him a negative result and no break down. He was livid because he had specifically written on the lab sheet Igg and Igm.

remember lyme is in 49 states... we travel and birds fly :).

If the family is sharing symptoms I would look at being tested for things like lead etc ( enviromental toxins)

Best of luck

Rebeccah

[sllowe]

Hey Rebecca,

Nice to see you.  I'm glad you were able to get up the energy to update us.  We've missed you!

I hope the treatment begins to work.  What does the Doc say about the returning symptoms? Is this what happens?

Chat when you can,
Shelly

[kitty_female]

I had two tests for Lyme one in 11/07 and the result for Lyme Western Blot was = 0.67  (Negative results) and the other in 05/08 the result was = 0.15  (Negative results). You mention something about Band-23. The report my dr. sent me only the above information.
Do you know what those numbers mean?

I have many symptoms, but my doctors won't give me antibiotics until they find out what is causing the symptoms. The worse thing is that my two kids are getting the same symptoms more often.

I wanted to take my 2 kids with me to be checked together and I contacted some Lyme literate doctors, but unfortunatelly they do not accept insurance.  So I have to stick to my doctors (they are really good, but I do know how good they are with lyme - California is not known as a Lyme state.

Hope you feel better!

Kitty

[wonko]

Thank you for explaining that in more detail.  I am sorry I sort of hi-jacked your post, my cyber-manners have gone missing  lately.  I'm glad to see that Quix started a different thread about Lyme disease, so hopefully other better behaved members of the forum can come here to read your update.

I never had the ELISA, just the Western Blot.  I'm gonna dig out my test results and check my numbers, though I know none were abnormal.  That along with no rash/known bite, I suppose the matter has been looked into well enough for now.

Again, thanks for the info, and sorry for stepping on your update!

Take care.

[speechgeek]

To All

Most doctors give a test called the ELISA ( enzyme-linked immunosorbent assay) . It has a very high false negative rate. Should it pop positive a Western blot is then done. The western blot measures the antibodies your body produces to fight lyme. The western blot consists of 2 parts... Igg and Igm. The Igg consists of 10 bands and the Igm consists of 3 bands.

The CDC (center of disease control) wants you to have 5 positive bands on the Igg and 2 opositive bands on the Igm to be considered Lyme positive. Lyme experts say it doesn't  matter HOW MANY bands are positive just WHICH bands are positive. Band 23 is specific for Borrelia Burgdorferi.

Now even though the CDC criteria "is what it is" my lab results from my PCP has the following disclaimer on it

"Although considered a negative result (because it was only one band) the presence of one Ibm band may occur with a recent exposure to Borrelia burgdorferi and may warrent further serological testing if clinically warrented."

I nshort... pull a tick off you put it in a zip l;ock bag and save it for possible further testing. Second insist on a western blot with Igg and Igm. I hope this helps.

Rebeccah

[Quixotic1]

Hi, Kiddo!  So good to hear from you, but not with the news that you're not doing so well.  I'm trying to understand what has been happening to you both in the context of what I know about infectious diseases and what the Lyme experts say about that particular infection.

I want to leave this thread alone so we can all greet you and wish you well.  I remain fascinated by the Lyme infection and the resolution of the controversies surrounding it, so I am going to start a new thread and talk about what I understand, what some of the facts are.  I hope you go over and check it out, because I would like to see how it might fit what you are going through and what your Doc has told you.

You are missed here.  You always have such great input to people's questions.  And we often have issues that come up with speech and language, most recently disfluencies and stuttering.

And I want you to be careful about the antibiotics and a GI infection called "C. difficile."  So I hope you are a heavy-duty probiotic.  I understand that Lyme docs are usually well-clued  in to that.

Also, either you are I should write up a blurb that could go on a HealthPage  ( I HATE that name!) about the difference between the s**t ELISA test and the Western Blot.  So we have a lot for you to do around here while you regroup.

Welcome back and have some ice cream.

Quix

[wonko]

Thank you for posting this update.

I just had the Western blot repeated (done the 1st time in Jan 08).  You say something about "band23."  Excuse my ignorance, but how can I tell that Lyme's has been properly ruled out?  I've tried to understand this before through posts and online research, but I get confused by the responses.  I may be getting a lumbar puncture soon.  Is there any CSF analysis for Lyme's?  The order for the LP lists a lot of stuff, but I don't know what it means?

There were 2 unusual events in my life shortly before my symptoms became obvious:  I had a bout of infections.  I can't spell, but I had bronchitous, sinusidous, and ear infections, all on top of each other and was very sick for at least 2 months.  Not long after, I went on a summer trip to Alaska for work.  I was not outside that much, and did not notice a bite/rash, but would like to feel confident that Lymes has been properly tested for.

Any advice is greatly appreciated, and I am glad to read that you are moving on to proper identification and treatment.

[Wobbly]

thank you for updating here for us, I have heard so much about Lyme... I have alot of the symptoms you have mentioned for the past 3 years.  I do not remember any ticks or a rash....

The Dr did test me for Lyme, but I do not remember which test and maybe I should ask to be retested... I'm from BC Canada...and I know that here we have alot of people not being Dx for this.

thanks for this info and I will bring it to my Dr again.

take care and stay in touch... hugs

andie