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.
omg, what hell you have been thru. i am so sorry. i do not know these dr's, but i can tell you that the l yme tests are not 100%. i had lyme for 6 years before i found my dr and finally tested positive. most of my tests (eliza and western blot) came back neg. i would certainly get tested though. make sure it is at the very least a western blot.
if my dr were looking at your lyme test with a 1.0, he would say that you were exposed and would have treated you for lyme.
good luck and i hope you find your answers and what is wrong and get the help you need.
Thanks for the good luck wishes. I think that just finding this website has helped me to go forward and find out what is wrong with me even if I have to
force a doctor to listen to me. I forgot to mention that the chiropractor that
I was seeing has a new machine that she puts vials in and has you hold a
brass rod and this is supposed to help clean the toxins out of you. It sounds kind of far fetched but she is not a stupid person and doesn't charge
me anymore money to do this so I guess it is worth a shot. What's so funny
is that after about 4 - 5 weeks I felt nauseous and headachey (sp) and I
thought maybe I'm experiencing a herx reaction. She actually was trying to get the cortisones out of me and then added a vial that supposedly has
something to do with bacterial stuff like Lyme. I sure wish it would work,
I'd much rather sit in a massage chair and hold a brass rod to make this go
away. Don't worry I'm still going to follow through with the Lyme test but
this is worth a try too. I figure, who ever thought you would get electricity
from a key, a string, and a kite. If nothing else she is trying to build up my
immune system, that should help. What's really funny is that all the "natural"
type people that I have dealt with have been more interested in getting to
the root of the problem not just making the symptoms. I still need to find
out whether to just do the western blot test or do the test with that doctor
from Massachusetts. Maybe his is more in depth, I don't know. Again does
anyone know if it matters what you do if you are diagnosed. Does it make
a difference if you take doxy or the IV? Will one take longer to respond?
I just want to feel normal again and have the energy to walk more than a
few aisles in the grocery store without feeling exhausted. Thanks again for
any input and you all are in my prayers for a speedy recovery.
I am looking forward to BETTERDAYSFORME!
dr steer is a turncoat and should have his med license removed! he is credited for discovering or just labeling lyme in the usa. a short time later he denounced the severity of ld! sounds to me like he was threatened or paid off. there is a couple drs in tx in houston. dr w.t. harvy that wrote an outstanding paper on ld. i heard he no longer takes new patients but dr salvato his asociat does. his number is [ do not post telephone numbers - doctors by name, city and state - only ]
good luck and God bless you
Last edited by moderator2; 10-17-2004 at 11:50 AM.
Reason: please carefully review the posting rules - doctors by name, city and state only.
Please stay away from the doctors you mentioned. If you do some more research you will understand what Ohio Hunter is telling you. Dr. Steere and his associates are bad news. This being said please stay away from the ID doctor you mentioned. He will not help you. Please find an LLMD (lyme literate medical doctor) asap. Your will feel so much better with proper treatment. I am so sorry you are going through so much.
Yes, steroids are no no for someone that has lyme. They surpress the immune system so the disease gets stronger. I could not shop either as I barely made it through standing in line... I am not a doctor but I bet you have lyme and I would not rule out another tick borne disease.
If the machine you are speaking of is what I think it is I do not think it is far fetched. However, you need to see a knowledgable doctor and take proper medications. Tick Borne diseases are nothing to play around with. You need to be tested for co-infections (Babesia, Bartonella, Ehrlichia, Mycoplasma) as well as lyme. I hope you are feeling better very soon. Hang in there and please keep us posted.
Hello. The rod you are speaking of sounds a bit like an electronic devise to kill "critters" some call a rife machine. They do sound very far fetched at first, but if you read Huda Clark's book, they are really quite interesting. They do not interfere with any of your treatments, and that's good cuz I would NEVER use just that to kill spyrochetes! But, if it cannot hurt, I wondered and researched them. This book I mentioned previously gives natural babesiosis treatments as well and tells you exactly how to make the machine for yourself. I actually know some people that use them, and they are not like tree hugging hippies either, surprize surprize!! (smile) They swear they work and they are much better, quicker b/c of them. Who knows, but if it can't hurt and I had the disease, and not my little guy, I would probably try it. I take no chances with him--no experiments, he's 8. Good luck with all of your treatments.
Unfortunately, we all have experienced doctors who think high dose or long term antibiotics are hokie, so looking into alternative therapies---or should I say additional ones---has been interesting. Just be careful everyone. Do not ever think these therapies are a substitute for antibiotics!
You sure have been through a lot. I know it is frustrating to be so sick and not get any answers. You defintely should be evaluated by a Lyme knowledgeable doctor. No test is completely reliable, and from what I understand the ELISA or titer is the least reliable.
You are right that steriods can make Lyme symptoms worse. This seems to be true in your case. It is very important to see a knowledgeable Lyme doctor. Many doctors do not understand Lyme and follow outdated treatment protocols. I would not recommend seeing the doctor you contacted. Besides Lyme, ticks can transmit other infections--Babesiosis, Ehrlcihiosis (HME & HGE), Bartonella, and Mycoplasma. It is very important to be tested for these because many people who have Lyme are co-infected.
I wanted to keep you all posted on what I have been doing so here goes. I hadn't
heard from anybody yet so I went to my doctor to get another Lyme test. I asked
him about Dr. Steere's test and he said he would do what I wanted but that it just
didn't sound right that Dr. Goodman would only see me if the test was evaluated in
Boston. He didn't use the word scam but I feel like he wanted to. So he did a Lyme
test and a thyroid test because of my dry skin and hair falling out problem. I'll keep
you posted on the results.
I went back to the chiropractor today and didn't really have her do anything except
for the brass rod machine. I mentioned to her a rife machine and she said that the
machine she is using is better than that. I just have to rely on her judgement on that. Any way when I went to see her last time she had the girl in the front give me
some medicine called "ultra prime secretagogue HGH enhancer and prime factor for
women. The first is supposed to be a human growth hormone enhancing dietary
supplement and the other is a human growth factor formula. Of course it is all natural. She doesn't deal with anything else. Anyway when the girl checked me out it was $131 and I didn't know what to say so like a fool I wrote the check and kicked
myself all the way home. When I got home I called and said I couldn't afford this right now and I was going to bring it back. Well the girl told the chiropractor and she
said I could cut the dosage in half and it would last twice as long but would take a
little longer to work. When I went in today she asked me again why I didn't want to take it and I told her that at this time it is just not something I can afford. Typical
for her, she insisted that I take it because it will start to repair nerve damage in a month and she is absolutely convinced it will help me. You aren't going to believe
this but she then told me that if I would take it she would just give it to me for as long as I needed it for free. She then said she is that confident that it will help.
I told her that I was waiting on the lyme test results and that I didn't want to start
on something else in case my test comes back positive and I need to start on oral
or IV antibiotics. The stuff has colostrum in it and that comes from a cow so I shouldn't be on any dairy products. She went back to her reference on the stuff and
said there wouldn't be a problem but that if I felt more comfortable waiting that would be fine. She wants me to bring in the test results so she can read them too
and check out the bands. This is all new to me but I do know that she really cares.
Unlike most doctors that treat you like a number she has decided that I am her
challenge. She still isn't so sure that it's lyme but she said if it is I should do the
antibiotics and then start this stuff because it will repair damage the disease has
caused and what the steroids did to my immune system. I guess that even though
I trust her completely I still have questions. Human growth hormones just sounds kind of futuristic to me. The only good thing is that they are natural and so far the
only thing that has created problems for me has been the regular meds.
By the way I do live in the Dallas area so if you know of any lyme doctors here let me know. Depending on how my test comes back I may need somebody with a sympathetic ear in case I'm in that "gray zone" again. Somebody who will understand
that symptoms mean as much as the test. I've heard that one dose of the IV can
really make you feel great so I guess I don't understand why they won't just do the one dose to see if it helps. Insurance probably.
Thanks for listening and all of your support. I'll keep you posted.
HI! Thanks for the update. I have to tell you, she does sound like she really cares about you, this chiropracter. Some of them are very holistic and knowledgable about good homeopathy. Colostrum has been known to have many healing properties, but human growth hormone--even natural forms act as steriods in the body and those you must be careful with. You must understand that herbs and supplements are not regulated, so you never know the true quality or quantity of your product. I think a lot more practicioners would Rx them if one knew for sure what they were getting each time. * A great way to check out all herbs and supplements to see what good they do, and also the contraindications follows--just research a bit... My best friend was just Dx w/ breast cancer and will be having surgery at Sloan Kettering Cancer Center in Manhattan. I am very interested in herbs and supplements for her as well as conventional treatment. I wanted info on antioxidants and cancer preventatives and so on that were safe for her to take and would not interfere with her treatment. What do ya know, they have a page totally devoted to this with all kinds of info on everything imaginable, many studies, and whethter it is safe and why or why not. However, they DO strongly suggest caution as none of these things are regualted, and you must trust your source of the supplement very much by knowing all about where it comes from and the manufacturer. You can find this too, it was really fun and I took lots of notes. Happy hunting, and I hope you find a great LLMD to give you antibiotic treatment in addition to your other helpful treatments. I just want you to get great BOTH!!
Last edited by laurie864bla; 09-17-2004 at 05:58 AM.
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
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!
*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?
i need no personal invite. i am home all the time now at 44 in a wheelchair. if i'm not on the phone taking care of wy oil customers, i'm on here poking my nose in anyway killing time trying to share anything i can with all.
Feel free to give me any info you have. I'm still not sure if this is Lyme
because of the way the tests came back but the infectious disease
doctor's office called yesterday and actually let me set up an appointment for the 26th of October. I think he just usually talks to people who have been
diagnosed for sure but I sent him 15 pages of info including the Newsweek
articles that clearly state that you can have a negative test result but still
have the disease. I told his nurse that if he feels more comfortable giving
me the Doxy because of my results I'll even try that just to see if it helps
at all. I figure that something is better than nothing. The question is if
it will help after 3 1/2 years? I'm game for anything right about now! Do
you know much about the difference between the IV medicine and the Doxy.
Can either one help? And how long must you take either one? I was sending
my last thread to Ticker because she seems so knowledgeable about all this
stuff but I will gladly take anybody's advice. I haven't heard back from Ticker yet but I'm sure I will. Please realize, I don't mean to slight anybody
and welcome everybody's input. I'm sorry that you are wheelchairbound.
Is this a result of the Lyme or another problem? I know that was a fear I
had when the doctors tried to tell me that I had MS. I sure wish they could
make some progress in some of the diseases cure - wise instead of just
treating the symptoms. I look forward to hearing from you and anyone else who can advise me. I will keep you all posted. You hang in there!!!