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I'm looking for some direction with some problems that I have had since
December 22,2000. On that date the back of my head on the left side
went numb nd stiff, on the 23rd it was the left side of my neck, on the 24th
it went into my left hand. Of course I thought that I was having a stroke
so I went to the emergency room - no stroke thankfully. None of these problems went away and my doctor sent me for another scan on my cervical
area. This seemed to show some shadow so he sent me to a neurologist
and he sent me for a cervical MRI which showed the same thing about the
size of a dime. He then sent me for a brain MRI because he was convinced
that it was MS. Nothing showed on the brain MRI so he sent me to a neuro-
surgeon to make sure it wasn't a tumor. Back to the hospital I went three
months later to see if the mark was still there; it was now about pencil point
size. The neurosurgeon said it couldn't be a tumor because tumors don't
shrink so it must be MS. I didn't know that there were only two things it
could possibly be! Back to the neurologist I went and he did an EMG for
carpal tunnel - negative, then a spinal tap to look for bands in the spinal
fluid - no bands, then an evoke potential to make sure there were no lesions
that didn't show up on the MRI - no lesions. So I am at square one but he
still thinks this is MS so he sends me to an MS specialist and he says it isn't
MS. Meanwhile nothing has gotten better. After 18 months of this with no
change my family doctor gave me some valtrex thinking maybe I just had some virus. After 3 pills I couldn't see out of my left eye. I felt that I haa reaction to the valtrex but the opthamologist, neurosurgeon, and MS specialist all blew that off because they said valtrex will not do that. I have
since found in a magazine ad for valtrex that on rare occasions it will create
vision problems - I guess that's me. Anyway the opthamologist told me it was probably MS. I told him that a specialist had told me no 18 months ago and all he could say to me was "that was then this is now". Nice, huh?
Anyway he told the neurologist to put me on solu-medrol (steroids) 1000mg
a day for 5 days with a nurse coming to my house for 4 hours a day to administer it. The night after the 4th day my heart went crazy and when the nurse came the next day she sent me to the emergency room and stopped the intravenous. It had killed my potassium and God only knows what else. Meanwhile the neurologist had sent me back for another brain MRI with optic nerve slices and everything was negative - no lesions again.
He was so sure that he would find lesions that even before the MRI he told me to go home and choose which MS medicine I wanted to go on. When he
saw the new MRIs he didn't know what to say. All he could do was throw his hands up in the air and say he didn't know what the problem was so he
sent me back to the MS specialist who had said it wasn't MS. Well what does he do but tell me now that it is MS because he thinks the eye problem
was another attack. So for 18 months nothing had changed at all but I take
3 pills and now I have MS. I just wasn't buying into this theory and I asked
him why nothing had changed for 18 months and allof a sudden I have added
problems. He couldn't answer me. I also told him that if I wear a support
glove when I'm doing crafts my hands aren't quite as bad and all he would
say to me is that my hands were a different problem. Wait a minute, my hands were the problem to begin with. He recommended that I go on MS
shots but I just couldn't do this because I wasn't convinced and to me the
medicine is scary. By the way nobody revisited the original "mark" on the
cervical area to see if it was still there. I kind of gave up on the medical profession and went to a nutritionist who got my system straightened out
in that respect anyway. I also was seeing a chiropractor to help my walking
and my hands. She at least gave me the feeling that someday I would get
up and walk okay instead of when will I be in a wheelchair. After all the steroids a friend recommended that I have a Lyme Disease test because about 2 months before all of this started my husband and I had been hiking
in Maine and had stayed in a cabin in Virginia on the way there. I went for
the test and of course was not feeling the best from the steroids (upset
stomach and no energy) and the test came back negative. Actually they
told me negative but I just talked to my doctor's office and they said it was
1.0 (whatever that means) and .99 or below is negative and 1.2 or above is
positive. I asked the nurse what about the people 1.0 - 1.2. She couldn't
answer me. Does this mean that I could have taken something 2 years ago
if it's Lyme Disease and would not still be going through this? Anyway in the
meantime over the last 2 years it has affected my walking, sleeping - what
is that, and also has gone into my right side. This started happening right after the steroids. Could they be the culprit? I did see on a web sight that
under no circumstances should you give anyone with Lyme Disease even the smallest doses of steroids. You couldn't get much bigger a dose than what they did to me. I went to accupuncture and that helped some with my legs but my hands have been 24/7 stiff and a little numb since all of this started.
By the way the vision came back but I don't have as much light in that eye as the other. I think that I am just stuck with that. So over 2 years has passed since the steroids and I feel like I am getting somewhat weaker in my
legs but don't understand it because I can swim and exercise in the pool with
no problems, it is just the walking. I think it has become one vicious cycle;
my neck and hands are still stiff, my legs are weak, I'm lucky if I sleep 3 -4
hours a night, of course the lack of sleep has really screwed up my equlibrium
and that's no fun. I walk like I'm drunk sometimes and I don't even drink.
Because of the problems and the doctors letters to an insurance company
after my husband lost his job I can't get anything but high risk insurance.
That costs $482 a month with a $2500 deductible. My husband went to work part time just to pay the insurance and now we find out that the high
risk people are going to drop me in December because part - time people can
qualify for $1000 worth of insurance a year. That's right $1000/year, can
you believe it! That's why I so desperately need to find some answers beforethen. Anyway one night somebody came into my husband's workplace
and told him that her husband had some of the same problems as me and he
had fallen down and ended up with an orthopedic surgeon and he corrected
everything. Well I had fallen down too so I thought it was worth a shot. Well he even thought it might be MS because he couldn't see anything on the old MRI's that would indicate it was anything he could correct. He was
puzzled though that my hands had been this way 24/7 without any relief
especially after all the steroids. So he ordered a cervical (yeah) and a brain
MRI for me (Of course this is my deductible - all out of my pocket). Guess
what. He had a neuro radiologist read the MRI's and there is no MS!!!!
He can't explain the original mark that started all of this other than maybe
some kind of shadow or something. At least it isn't MS. Thank God I didn't go on that medicine. I think every now and then you have to trust your gut feelings. We talked about my stress level which has been very high for the last 5 years and he thought maybe I should talk to a stress management doctor, which I have no problem with except I have to pay for the MRI's first.
Of course I feel that was money well spent. But you would think that if it
was just stress then I would start to feel a little better. NO! Even the
orthopedic surgeon told me that if he had been told he had MS he probably
would have taken on some of the symptoms. I love him for hisability to step
outside the box and do the tests and also tell me this. My best friend's
daughter has made it her mission to find out what is wrong with me and was
reading the article in Newsweek a few days ago and got so excited about the story on Lyme Disease and how it can be misdiagnosed. She is convinced that this is my problem. Needless to say I never new that the test could say no when in fact the disease may actually be your problem.
I started to look up sights on the internet and was fascinated to see how many of my symptoms are on the list. Icalled an infectious disease doctor
here in Dallas and was told he would only see me if I had been diagnosed
with Lyme Disease and he would only accept the test if it had been sent to a
Doctor Allen Steere in Massachusetts - affiliated with Mass General. The
doctor's name here by the way is Dr. Edward Goodman. I guess what I am
looking for is whether or not you have heard of him and if he is any good or
do you have other recommendations. I thought about going back to my regular doctor for the test but after this long will it come out the same?
As I said before I am desparate to get rid of this problem and maybe get on
some regular insurance when the high risk people drop me. What I don't know is whether the insurance can not take me after having had Lyme if it
turns out to be that. I guess I was intrigued by one of your threads that
talked about a woman who started out just like me with just the left side,
I thought I was the only one with this problem. It is very weird to have a
headache on only one side of your head. If this is Lyme would I need to go
on an intravenous drug or is the doxy good enough? One thing I will say is that either I tolerate pain more than most people or I'm just lucky because
to me it has been very uncomfortable but so far not unbearable
I JUST WANT TO SEE BETTERDAYSFORME! Thanks for your website.
Dear Ticker,

It's been a few weeks since I last sent a thread to anybody because I
have been trying to get all of my ducks in order so I can maybe get
somebody to treat me. I went for another Lyme test and it came back
differently this time. I guess the lab has changed the way they configure
the results. Anyway the first test that I had done on 7/23/02 came back
negative. I'm not sure how they determine how you are in one category
or another because the categories were:
< OR = 0.99 NEGATIVE
1.00 - 1.19 EQUIVOCAL
> OR = 1.20 POSITIVE
My test was a IGG, IGM Western Blot and the EIA value said it was <1.00.
What I don't understand is why wasn't it just listed as <.99. Is there a
value between <1.00 and <.99?
My primary care physycian said it could still be Lyme so he did another
test on 9/14/04 and this time it came back with band results not a
number like the last one even though the nurse said she ordered the same
tests. The results were:
B. BURGDORFERI AB (IGG), NEGATIVE
18 KD (IGG) BAND NON-REACTIVE
23 KD (IGG) BAND NON-REACTIVE
28 KD (IGG) BAND NON-REACTIVE
30 KD (IGG) BAND NON-REACTIVE
39 KD (IGG) BAND NON-REACTIVE
41 KD (IGG) BAND NON-REACTIVE
45 KD (IGG) BAND NON-REACTIVE
58 KD (IGG) BAND NON_REACTIVE
66 KD (IGG) BAND NON-REACTIVE
93 KD (IGG) BAND NON-REACTIVE
It said you need 5 or more of the 10 significant bands to be considered
positive per the 2nd conference on Lyme Disease, Dearborn, Mi., 1994.

B>BURGDORFERI AB (IGM), NEGATIVE
23 KD (IGM) BAND REACTIVE (abn:A)
39 KD (IGM) BAND NON-REACTIVE
41 KD (IGM) BAND NON-REACTIVE
It said you need 2 (or more) of the 3 significant bands to be considered
positive for specific antibody to B. BURGDORGERI. All this from the above
mentioned conference.

As I said they are labeling this as negative because I don't fit the criteria
and what I don't understand is why it would have that 1 reactive band.
Does that make it questionable or does that pertain to some other problem?
Was this test only for Lyme or does it show other potential problems? I'm
just not that medically literate to know the answers.

My primary care doctor did think that I should see an infectious disease
doctor though because I'm kind of in a gray area and clinically everything
points to possible Lyme. I have contacted one in Plano ,Texas and sent
all my paperwork to him and he is reviewing it now and I should hear some-
thing today. I'm not sure he can help if he isn't convinced it's Lyme. My
primary care doctor 2 years ago had given me Doxy when he did the test
and I was just coming off those massive doses of steroids that my neurologist had given me so I didn't take them right away and then when the test came back negative I just put them in the medicine cabinet. I joked
with my doctor's nurse and told her that if I can't get some results with the
infectious disease doctor then I'm just going to take the Doxy he gave me
and if I'm feeling better he's just going to have to give me more to get rid
of this monster. She laughed and said she would run that past him. I really
think he would give me more if he saw an improvement. The question I have
is will oral Doxy be sufficient after dealing with this for 3 1/2 years or must
I be on the intravenous? What he gave me was :
Doxycycline 100 mg caps to be taken 2 times a day for 4 weeks
After reading your threads I realize this is probably not long enough so I
will need to get him to extend it but for how long? And again will the Doxy
work at this stage of the game if in fact it is Lyme. I think you said some-
thing one time about taking medication even for a while after the symptoms
are gone or you stop having herx problems. By the way how long does a
herx problem last. Does it come back about every 4 weeks until you are
rid of this monster or is it continuous. These questions may be old hat to
everybody on the website but I'm a novice at learning all about Lyme. You
know I have mixed emotions about this being Lyme but at least I will feel
like I'm finally doing something to get my life back on track even if it takes
some time. If you don't think the Doxy will work do you know of any LLMD's
near the Dallas area. To be honest with you I don't care what kind of doctor
I end up with as long as he is willing to go the full route. By the way if I
do end up going the Doxy route, what is the normal (if there is such a word
for this) time in which you will at least feel like you are making even the smallest amount of progress. Maybe this just depends on the individual?
I just want to know that I should feel some improvement so that I'm sure
I am treating the right problem, even if it is just baby steps!

By the way I also sent the doctor my spinal tap results from 2 years ago
that I had never seen and the only thing strange was a high red blood count.
The oligo bands they were looking for were ABSENT and the VDRL was NON-
REACTIVE. The Myelin Basic protein was 0.9 and should be <1.5. It really
makes me angry when I see this because what were they basing there
claim on that I had MS. No lesions either. Aren't neurologists trained in
Lyme and other possible diseases? I guess not!

I guess that's all for now. I eagerly await your response. As a side note,
I have promised myself that by the first of the year I will be doing better.
My son is in Baghdad and is due home in January. It would be so nice to
come home to a normal mother ( if there is such a thing). This right now is my goal, keep your fingers crossed for him and for me. THANKS!

BETTERDAYSFORME

*By the way, a quick question. The last time I wrote, I didn't want to leave
anybody out so I addressed my thread to a few of you so you could keep
up with me. Does this work or must I address you all individually?
Dear Ticker,

I finally have some news for you. My last e-mail let you know that I had an
appointment with an infectious disease doctor and he told his nurse he could help me after reviewing all the stuff I sent him about my case. When I got
there the first thing he said was he didn't believe that I had Lyme. Well you could have knocked me over with a feather and his nurse was totally embarassed too. He did some base line type blood work and said he really didn't think the insurance would pay because only the one band came back positive but he would see. I got a call 2 weeks later that they had approved
the meds. Was I surprised! I really thought he would sabotage the paperwork to the insurance because of his feelings. Anyway this past Wednesday I had the pic-line put in and then went to his office for my first dose because they have an infusion room and an on staff pharmacist there.
They did the first dose and showed me how to do it at home. I had to go
back the next day so they could change out the bandage and give me a weeks worth of meds. I am to go back every Wednesday for blood work
and to get the next weeks meds. He put in for at least 6 weeks just to see
if it helps and then we go from there. I told his nurse that I didn't want him to do this just because I wanted it but she said she really thinks he has
feelings it may be Lyme because he would not be doing this if he was sure it wasn't Lyme. I sure hope I start to see some improvement before the six
weeks is up. When I got up Friday (after 2 days of meds) I can't say that I felt better but something felt different in my legs. I can't really put a finger on it but they didn't seem as tight or something like that. I got real excited but later in the day and today it was the same old thing I have been experiencing for almost 4 years. I know in my heart it wouldn't work that quickly but I got real excited and now I'm just saying to myself this will take time. The nurse and pharmacist say at least 2 - 3 weeks before I see anything. Does this sound right to you? So far no real problems with the meds other than diarrhea but that I can tolerate. I am taking the acidophilus
to keep the good bacteria functioning. One thing I have noticed is that I get real limp (no energy) after a dose. Is this normal? I also told them that I feel like my glands are swollen but it is real funny that my throat hurts more in the front than the sides a few hours after the meds. This feeling does go away after about 6 hours. They thought I might have drainage or am getting a cold. They said this was not the throat closing problem because I would definitely know if that was happening to me. By the way the meds I'm taking is Rocephin 2g. The nurse that changed my dressing on the second day sounded like that was a lot. I wonder why he would give me a high dose if he didn't think it was Lyme. I will say that he said the Doxy would not get it if I had been sick for so long and that it was neurological now; which it definitely is at this point. I wish
I knew when I could expect anything in the way of permanent change or even just change I could identify so
that I didn't feel as though I am doing this for nothing. Actually I don't feel this is for nothing but it is a big commitment for a test that came back negative. I guess I just have to hope for the best and if it doesn't do the trick at least I've ruled out Lyme. I love his nurse and pharmacist because they insist I'm going to be there "miracle child" (at the age of 56!) and make the doctor not always have a black or white attitude. I hope they are right. If anybody out there can give me some feedback about the amount of time it took them to get better (even just a little) and what to look for in the process please let me know. Say a prayer for me that it is Lyme and I'm finally on the right track! Even with insurance it will be an expensive thing to do but well worth the money if it gets me better. I really don't want to have negative thoughts because that doesn't help and I do know you can have Lyme without a positive test but I'm still doing a lot of praying! I even enlisted the doctor and his staff who put the pic-line in to pray for Lyme. He couldn't believe they were trying to tell me that I had MS at the age of 56, he said it was highly unlikely to occur that late in life. Isn't it terrible that you pray for a disease! But at least it would finally put me on the road to recovery. I apologize for my rambling but after almost 4 years I can't help it. Thanks again for your help and prayers and I'll keep you posted with my "progress". See I do have a positive outlook!!!
Love,
BETTERDAYSFORME





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