Finally going to a Neuro

[gibsongal]

hey people... wonder how the battle goes with you all...After 2 years of intense pain i finally am going t a Neuro in 2 days.
I have so many ? for them.

I hope to get a dx, prognosis and treatment plan.

As all my Lyme tests are negative..CBC Blood tests good...even had the lyme  spinal test when i was in ER with extreme headache and throwing up last Aug. Doc (i fired him) at that time was not happy to order that lyme test but since they had the spinal fluid i asked it to be tested. (looking for meningitis and what not for head pain) it was negative all around..

.. my condition is some other neuropathy or myositis. Sometimes i wish i would have an MRI of my brain to see is there is anything there.  maybe they will do that..

many people have lyme, many do not... i really thought i did as i have picked many many tick off of me all my life.  my symptoms are so similar.i was convinced.i let my self go down that road and get tested and tested and tested....i was wrong. spent too much time with it... but met nice people here!

. still searching for an answer. could be medication induced as one rheumy 6 years ago suggested
(i was not told! found out when i got my medical records.)

so those of you who are still testing negative and have the lyme symptoms i feel for you as the wondering and searching is so stressful.  at least a DX of something then one can plan, treat, visualize, meditate and learn how to get better.
one cannot if they are not diagnosed.

so still searching here.. my question.. i have been shoved around and left to go home in pain and no referral until recently when i found a new doc in the big city..

should i ask for an MRI.. will it show anything?  so many diseases that fit my symptoms show "white matter' what ever that is...

for instance. finally .i had a cT on my hip in march i worried and worried. for almost 2 years...  showed nothing.. took doc 6 months to refer me to osteopath  osteo knew right away.didn't even need a ct for him to dx..it is common!) ..it is bursitis.. ... with PT, excercise and ice massage there is a good chance of being pain free in a month... now.. how come it didn't show on the CT? and why was i left to be in pain with this for 20 months and Dr. after Dr. not even one mentioning bursitis.. it is common! i didn't think of it. i am not a doctor.

so wiith the neuro..  what test will he order and if nothing shows up where does that leave me?
i am nervous and have anxiety with the docs ....althogh the city docs are not at all like these here.. night and day.. i cant wait for the apointment.. too much time and damage has gone by..
thanks people hope you are well or at least ont he mend

[gibsongal]

f i had not trusted the doc who took me off … i had no informed consent.  i was not told that the CDC, WHO and FDA say it is a big no no…

i feel he can't get away with making me sicker..and he's "the specialist"

let alone the possibility of Lyme…he never referred me to atone else when i complained of leg pain for months and months..



• Discontinuing or briefly interrupting therapy in a patient with viremia may lead to a rapid increase in HIV RNA and a
decrease in CD4 cell count and increases the risk of clinical progression. Therefore, this strategy is not recommended

also interruption is also not recommended unless done in a clinical trial setting (BI). (See discussion below highlighting potential adverse outcomes seen in some treatment interruption trials.)

(AI).   A Strong I = Data from randomized controlled trials;

[gibsongal]

hey thanks..you are right. yes when my immune system T Cells went down off the meds then back up very fast on meds i started alll this pain. i was bit by a tic  when off meds.. also that spring while on meds..

and the docs.. went to Boston. they were prof. but still no answers.

i stopped the antidepressant a few days ago because i couldn't cope with anything. crying and slower, not clear when driving.. and just really depressed.. it did help my neuropathy in my feet! oh well. the only other alternative is to keep taking it and then take something like   retiling or adder all to combat the fatigue and unhappiness… i am not a pill popper and then going up and down emotionally is terrible..

i have a lot of ? for the boston docs this week. making a list.
the MD i have here  has given up. we had problems when i first started seeing him and i just can't let that go. until i find a new MD (nearly impossible) i have to stay with him.  

imagine .. after being treated like a child and dismissed and accused of being bi polar and mentally unstable i find myself with sleepless nights and anxiety for a week before i have an appointment with him.
last week he never asks about my pain and how much pain meds i take. he has given up on finding any remedy.

last night i again had to prop my arms on pillows and my yea as my neck hurts so much at the end of the day.  I did chores and cooked.. big deal.. that is not right. i should be able to do things  and not feel i have to put myself in traction.

so lets hope the boston docs can do some other testing. thanks for the input people..  

[cave76]

  A very good Lyme doctor that knows a LOT about HIV and AIDS in in San Francisco. If you can get an appointment with  him that would be great. (Sorry, I don't remember where you live, so I'm only offering him as a suggestion in case you live near enough.)

http://www.usmamed.com/00resources/htm/cv.htm

In 1987-1989 he won this award. (That's not the only one) He then turned his attention to Lyme.

AIDS Investigator Award K87SF057, California Task Force on AIDS

[JackieCalifornia]

Gibs,

Repeat after me:  "it's not me -- it's the bugz."

That you feel badly about not being the best of company right now shows that it's not the real you -- it's biochemical.  Your brain recognizes your moods as something unlike the real you, which means it's NOT the real you.  It's the bugz running riot.

Rico's suggestion sounds like a good one.  Give it a try?

[Ricobord]

I am so sorry you're going through all this!  It does sound like your
docs are not giving you the best treatment. Can you get a referral to
a big city facility experienced with long term HIV patients?  I think
it would be great if you could go to UCSF and see a doc knowledgeable
about HIV & Bartonella.

It makes sense to me that you're dealing with another infection if going off the HIV meds led to new problems. If HIV proceeded to suppress your immune system, a latent infection could flare up, or a newly acquired tick borne infection could more easily take hold.

When docs begin grasping at straws or worse, blaming the patient, it's
time for new docs.  In your case, new docs in a different place who
will understand your case.

Patients shouldn't have to fight so much to get decent care, but that
seems to be the trend that's not going away.

Check out Dr. Jane Koehler's page. You can see the list of papers she's written on NIH grants about Bartonella in HIV patients.

http://profiles.ucsf.edu/jane.koehler

[mojogal]

It will get better. If you have hormone problems and can fix it.

My thyroid became hypo from Lyme and my hormones were fine before. There is nothing wrong with taking an antidepressant and anti anxiety meds if you need it. I take them and keep telling myself, it's only temporary.

You go girl....making a wreath. That is great!

[gibsongal]

thanks mojo

i had some checked and will get results next eek
tsh?
years ago i had hormome tests via my gyno.
they were normal. although i do not know what they checked..now that i know more about blood tests....
we'll see..

very moody weepy and angry today. i hate it. every day i say tomorrow will be better and it has not in a week..
oh and so it goes.
i hate my hubby seeing me this way and i am doing everything i can to avoid him.!

it will get better..i'll shower and get out  of my ratty chore clothes..look good feel good? helps sometimes..

i did make a wreath today!

[mojogal]

I am only speaking about my own experience but I was very depressed before menopause. My LLMD tested my hormones and I indeed had to take hormone replacements. That and an antidepressant fixed me up. I still have Lyme anxiety but it's not as bad at all.. Have you had your hormones checked?

[gibsongal]

hey thanks for the support.
i'm not sure about the nortriptaline. i think it is helping my feet. before the med, they didn't hurt all day every day but when it hurt it was bad.. the thing is i feel so much more depressed.
started on 10 mg and went to 20  i was so dead feeling and tired i went back to 10 and every day i wake up crying.
i have so much to be happy about in my life.and i feel tired and speachless and mad. it has been just over 2 weeks and i am trying to give it a try but this is not like me. even when i perceive things in life  are really bad i have a day or half a day of a pitty party and then snap out of it..now every day is doom and gloom all day...
my body pain was a lot better, and have been decreasing the dose of pain meds to get off of them... but the feet were acting up so this the med. was given to help. the feet and get off pain meds all together.

i did have 1 month , august, this year when i felt really good and happy and pain free and almost got off the pain meds completely.
the foot thing started in september. the pain meds didn't help the foot problem.

i need to figure out what to do. stop the nortriptaline of try and stick it out. i know these thing take time getting used to ..
i see my PC doc this next week and i am already upset about having the appointment.
after being so dismissed with the docs the past 2 years i have a lot of anxiety when i have an appointment coming up.  this was not an issue in my life before.

and tis all started when my ID doc took me off HIV meds. when i re started 3 months later the pain started. the med sheet said if you experience pain, muscle pain, weakness, fatigue call you doc immediately. i did and they did nothing.
first i thought it was lactic acidosis..they said no.
then i learned about IRIS... they said no.
i think it was  IRIS. something happened to my neuro system..
no one wants to say so. the boston docs said they would never take a paitent off meds. .but did not think it was IRIS.
and i have read that the CDC WHO never recommend taking a patient off meds..i get so mad at loosing my life when i was ok before the med break (had leg weakness , cramps and knee pain) was bitten by a tic that spring and fall..and the year before.

i may stop the nortriptaline if i can't get out of this depression.
every time they try to put me on an antidepressant i get more depressed. i think i need dopamine, not inhibit the dopamine..

also i still get my periods and i am 52. perhaps an endocrinologist?
my cortisol was fine and b12 and all other blood tests.
the shrink my PC made me see said i have an adjustment disorder..
she does not know me.. i have adjusted to my HIV . it happened 22 years ago! what i can't adjust to is the fact that it took 20 months to go to an orthopedic and be dxed with bursitis! that fact that i was denied care when in pain because of my hiv and they accused me of drug seeking..and sent me home to suffer with pain attacks where i would just lay in bed and feel the electric waes of pain running up and down..
now that is a neuro thing i guess and has nothing to do with the perferial neuropathy in my feet.

thanks for letting me spew!
i find support here and i love you all for that. as i am very rural and feel so isolated.
thanks  to you and the internet!

[mojogal]

Ditto everything above and more then likely the neuropathy in your feet is from Lyme or Bart's. I have it too.

[Ricobord]

Stabbing pain in the shins?!?  That's a huge red flag for Bartonella, especially Bartonella Quintana (Shin Bone Fever).  Not many things make the shins hurt.  Bart can cause the whole body pain, too.  Look for the various UCSF articles on Bartonella.  Some of them are 15 years old, but the ID docs there were discovering advanced Bartonella in their HIV positive patients all the way back in the 90's.  Hmm.. makes me wonder how many Bart patients have been misdiagnosed with Fibromyalgia...)

Neuros know little to nothing about Bartonella.  Well, most doctors know nothing about Bart. I literally had to spell it for my GP after I was diagnosed with it. You might consider going back to that LLMD for a conversation about Bart and perhaps a Rifampin or Levaquin prescription.  Maybe you never felt better on anti-Lyme meds because you don't have Lyme, you just have a bad case of Bart. Bart does a good job of mimicking Lyme, causing rheumy and/or neuro symptoms, along with GI problems and lesions inside and out. And of course there's the neuropsychiatric symptoms.  As far as multi-system symptoms, it's up there with Lyme on the nasty infections list.  I've only had Bart's neuro and GI symptoms, along with some anxiety.  You can have any combination of the symptoms it can cause.

My doc didn't even bother retesting me recently when deciding to treat me for a Bart relapse.  The tests are just too unreliable, although a positive is certainly helpful.  (Note: I've had a little light buzzing in my Achilles' tendons since resuming Rifampin about 2 1/2 weeks ago. I was surprised. I always thought that was a Levaquin side effect when I took it in the past. Now, I think it's just Bartonella.)

I took Nortriptyline for quite a while.  The neuro in the hospital a couple years ago told me it was "an older sleep medication."  I read the drug form when I got home and realized it was an anti-depressant.  I thought the neuro tricked me into taking it, but it did help me sleep so I stayed on it.  

It was over a year later that my GP explained that Nortriptyline and Amitriptyline can reduce nerve pain in some people, a good side effect, I guess. The neuro thought my unexplained abdominal pain must be neuro in nature given my unexplained brain lesions and lack of a GI diagnosis.  (Go figure.)  I didn't actually have any neuro pain, so it just turned out to be a useful sleep med and antidepressant for me.

If you feel too flat on it, you might try to reduce the dose. You might need different dosage pills than what you have now. I was on a low dose, only 35mg a night, taking a 25mg and a 10mg.  I tried to wean myself off at one point and felt myself getting depressed. I stayed on it a few more months, then managed to wean myself off successfully by substituting 5-HTP for my new Babesia induced depression. The neuro who initially prescribed Nortrip just said to take it "as needed for sleep." But it was my GP who warned me about staying consistent and weaning myself off.  I think this was better advice.

I don't know how long you've been on it, but you might feel depressed if you stop suddenly.  Talk to your doc about dosage as that might make a difference for you.

If Bart testing is negative and you want to eliminate, you could always go for the culture test. It's said to be much better at finding it.  But it costs several hundred and I don't know if any insurance covers it yet.

[cave76]

I'm sorry to hear that the neurologist wasn't much help---- but not at all surprised. I didn't want to say that before because it might seem 'not helpful' :(

But neurologists follow the same unhelpful guidelines as do Infectious Disease doctors. And that's NOT a good thing.

I think it would help you a lot to read all of Tom Grier's articles. Just google his name. Yes, that might seem like a lot to do----- but it will give you the necessary facts that you may not know now. Just a suggestion and feel free to ignore it.

[gibsongal]

hey everyone,  update here..
so neurology was not that much help. I have had peripheral neuropathy  in my feet,  from a medication back in the mid 1990's. it went away and then became a little bothersome last January then it went away. it came back in Sept worse. hard to walk sometimes and my heal and Achilles tendons are sore. toes cold and numb. so
neuro doe not know why the whole body pain.
fibromyalgia.
i believed them about that a year and a half ago and did the cymbalta and lyrica and it did no help. those meds are bad!

neuro thinks that Nortriptaline will help with the feet as well as with the other fibro pains. i took it for 10 days and it helped the twitcing and some of the foot pain i think, but i was feeling totally dead in the head and could not get my self to even think of being aroused sexually. like i was dead that way.. IDK. so i stopped it this weekend and perhaps will start it up again idk.

they said the stabbing pain in my shin bones is the nerve.
no MRI.
i see my primary next week and perhaps he can answer the new questions i have..
like if it is peripheral , the feet and cold hands, then what about my core pains.. back, shoulders elbows knees?

so i am waiting a bit to try to go back on the nortriptaline.  

i have been going to PT for the bursitis. i think it is slowly getting better.
my fatigue is not as bad. no huge pain attacks since Oct 11. and that was the first one since many in July.

i know that in searching for an answer for these mysterious symptoms we say Lyme and the docs say no.. when i look up fibro symptoms i don't really fit .  so... what the heck.  

i do have a lot less pain since i switched meds in august.
my whole thing could have started from being allergic to  or having an odd reaction to some meds i was on when it started in the fall of 11...

[JackieCalifornia]

Since your Western blot was positive, are you certain you do not have Lyme?  I understand that Texas is a difficult state to get diagnosed and treated for Lyme, but if you have it, it's best to get treated sooner rather than later.

MRIs are not particularly useful in diagnosing Lyme because MRIs look for structural defects, but a SPECT scan can be very useful in Lyme, because Lyme causes swelling in the brain, which limits blood flow.  An MRI does not show reduced blood flow, and so would likely miss seeing anything problematic in someone with Lyme.

I would think that having a Chiari malformation and Lyme at the same time is quite possible, since Lyme is a bacterial infection.  You may wish to consider consulting a Lyme specialist if you can find one in Texas.  There is a Texas Lyme disease association that may be able to help you find a doc for a work up.

Best wishes to you --

[MeganY24]

And I forgot to add, I've had more CT scan than I can count and it never picked up the Chiari Malformation. Some websites say that they can, but that was not the case for me. Good luck!

[MeganY24]

Hi there! I definitely think you should get a brain MRI w/ contrast. Even though my western blot was positive my infectious disease doctor ordered a brain scan to rule out MS since I've now learned most ID doctors will look for anything BUT Lyme as a diagnosis.

My scan didn't show any evidence of MS but it did show something called a Chiari Malformation. When I looked up the symptoms of Chiari they are almost identical to Lyme symptoms.

Both my LLMD and my neuro agreed that there is no way to tell where my Lyme symptoms stop and Chiari begin unless I have brain surgery to fix the malformation.

It's atleast worth looking into, you know?

[Ricobord]

Hi. I'm so sorry to hear you're still struggling!  
I thought I'd recommend you take two things to your new neuro:

Find an article or two on Borrelia Miyamotoi that mentions how everyone who has it tests negative on Lyme testing.  I doubt you have it because two rounds of antibiotics for Lyme didn't seem to help you, but if your neuro is willing to look into it, perhaps you could be tested for it.  There's very few research labs that can find it and the test isn't commercially available so it takes special access to get tested.  The CDC says they're "working" on a test for it but who knows when that might be available.

Second thing:  There's an article in PubMed on a recent Bartonella study done on over 300 rheumatology patients in Maryland.  Breitschwerdt's name is on the study, so I assume he did the lab work.  They found a LOT of Bartonella and observed a great deal of overlap with Lyme symptoms. They also found that a lot of them tested false negative on standard lab tests.  About half of the people with Bartonella had also been told by a doctor they had Lyme, which suggests that the other half had Bartonella without Lyme.

There's a doc at UCSF who has done pioneering work on Bartonella named Jane Koehler.  There's a bunch of articles out there about it.  They started finding it in their HIV positive patients back in the 90's.  She started mentioning ticks as a vector several years ago.

Bart can cause Peliosis of the liver, which you can see in a liver scan.  If you've had any digestive issues or abdominal pain, this could justify getting a scan. My liver problems showed up on a CT scan. (Unfortunately, my GI doc completely missed it and misdiagnosed me with a benign cyst, vascular mass, and fatty liver.)  Not everyone has this, so it's not required for diagnosis.  Some with Bart have joint pain and other rheumy symptoms, which I've never had. I've had the neuro and GI symptoms.

On another topic...
I've been reading a lot lately about parasites and how they can be a real problem in people who are dealing with other illness.  Parasites are very common, although most Americans think it's just an issue in developing countries.  

In most healthy people, the immune system keeps them in check.  But with chronic illness, they can really multiply and add a lot of misery.   I've read about people who did a parasite cleanse and found their joint pain reduced greatly.  It just seems that toxins build up in the joints and it takes a cleanse to help clean them out.  Anyway, I thought perhaps this might help you feel less miserable.

I am so sorry you're still in so much pain!  I hope your new neuro is sympathetic and really makes an effort to find out what's going on with you.

[JackieCalifornia]

It's been a while since you've been here -- sorry to hear you haven't been out waltzing and skiing. :(  Well, it's something to shoot for, right?  Right!

From what I read, an MRI is not that useful in diagnosing or ruling out Lyme, but a SPECT scan is, because the SPECT scan looks for areas of low blood flow in the brain, due to swelling.  MRI looks for structural issues like tumors.  Having a clean MRI rules out a lot of stuff, so having had one is not a bad thing.

Since you were negative on the IGeneX test (I'm assuming it was the PCR test, looking for Lyme bacteria DNA), what about other infections the ticks often carry, like bartonella, babesia, ehrlichia and others?  Lyme ticks carry one or more of those other infections maybe half the time, and there's no law that says the ticks have to also give you Lyme.  

Let us know how it goes, okay?  Sending you all good wishes --

[gibsongal]

i didn't follow up with the llmd. he is really good from what i hear. he def is in biz to make $. does not take medicaid.. they have naturopath, massage acupuncture all in the same office. they have 2 locations and he speaks a lot at functions.. so...he really did not think lyme.

i do not trust any of the docs on my insurance here anymore.

i will tell the neuro my history of tick bites.

[mojogal]

Well I feel better that the LLMD didn't think it was Lyme but it sure sounds like Lyme.

I was misdiagnosed with MS, Lupus, vasculitis, Hoshimotos and others. Perhaps you have one of those.  MS would show up on an MRI.

Is the Lyme Dr you saw a good one? Many Lyme doctors treat based on symptoms which is longer than 2 rounds of abx. That is what makes me wonder how could he was.

I wish you luck on Thursday and please keep us updated.

[gibsongal]

hey mojo..
yeah..did igenx neg.

saw a LLMD he did not think it was lyme although did rounds of abx. 2 times last summer. then i was in hospital with C.diff last Dec.and more abx..

just wonder if an MRI will show nothing or some other disease..

the pain in my joints, muscles, the twitching, fatigue , neck legs shoulders  arms hip back everything hurts..

someone must know something in the big city! wish me luck on thursday. a long drive and i am sure my hip will be in fire. it was on my first trip. could;t move the next day..and my hubby went with me and drove most of the time. this time i have to go alone.

[mojogal]

Hi, were you tested through IgeneX?

As for MRI a spect scan is a more accurate source of viewing for Lyme lesion in your brain however I had none near me and had to get an MRI with contrast that showed the Lyme lesions.

Remember that Lyme is the great pretender and can mimic other illnesses. I had bursitis with my Lyme. We just don't want you to have Lyme and let it go because the longer it goes, the worse it gets.