Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Dec 3, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi everyone. once again wanted to tell you about my latest visit. i may forget some details....i feel like my head is going to explode out of my neck right now lol

    after i saw dr. lerner 5 weeks ago, i improved further, reaching '4' on his energy scale (i was '1' when i first saw him). i remained at 4 for about 2 weeks and went about painting a room and re-caulking the bathtub (this may have been a mistake but did not seem difficult at the time, aside from the silicone caulk fumes).

    i also dealt with the death of my former employer, whom i was close to. this caused me some stress, but not a great deal.

    then - and i am not completely sure why - i began a steep decline to a 1.5 - 2. this was eventually accompanied by an intermittent ache in the left side of the chest radiating into the left shoulder and arm. i also began experiencing nausea and slight burning in the stomach.

    my appt with dr. lerner was scheduled for wed dec 3 and he told me that i should definitely see him on that day because of the fact that i had to stop valcyte 2 weeks ago due to liver enzyme elevation.

    on the night of dec 2nd, i experienced chest ache and pressure severe enough that i feared i would have a cardiac event.

    i paged dr. lerner who said that he would have to see me and said that i needed to be off valcyte. i told him i was off valcyte and that a grueling trip might be very hard at this point. he said to try to see if i could get someone to take me (i have no one to take me).

    i checked my blood pressure and it was 111/85. the diastolic rise concerned me a little.

    i slept a few hours and upon waking felt marginally better so i decided to make the trip. i had chest pain intermittently during the train ride, could not sleep at all, and felt severly ill.

    when i got to the office, dr. lerner ordered my blood work to be done STAT and an EKG.. my blood pressure was 135/94 and this concerned me quite a bit. dr. lerner asked me to describe my symptoms.

    my liver enzymes came back abnormal but lower than the last time so he was happy about that. he said to stay off valcyte. he ordered H. Pylori blood work, 24-hr. Holter ASAP, Esophagus (Barium swallow), and a U.G.I. The EKG was normal.

    i called my mother, who, despite my insistance that dr. lerner requires all his tests to be done at Beaumont, urged me to ask him if any of the tests could be done in toronto (her savings are depleting rapidly due to this illness). in toronto, i would not have to pay for the tests.

    to my surprise, dr. lerner said i could have the barium swallow and UGI in toronto (i may have trouble finding a doctor to order these here, though. usually, my former employer, who was a cardiologist, used to help me out with ordering tests, but he recently passed away).

    i will now have to schedule a 2-night stay in michigan for the Holter (i cannot get there early enough by train to have it put on the same day).

    ***if anyone reading this knows of a reasonably-priced hotel in the area which is safe (i will be alone), please kindly let me know***


    dr. lerner commented on how hard it is to practice medicine at a distance. i said that it is so unfortunate that so many are suffering and have no one in the area who knows what to do. he said he was creating some DVD's to train doctors.

    i asked him that, if we keep stopping and starting antivirals, are we not risking creating resistant strains of the virus? he said, "yes, but we have no choice. safety comes first."

    i asked him if he had had any patients who had developed resistant strains and he said "not really".

    i asked him if i might have enterovirus issues and he said "no...not at all".


    money strain is high now and causing tension. i shall apply for disability soon (i haven't applied yet because i had a few thousand dollars in the bank and would have been ineligible. also, i was getting better and assumed i would return to part-time work in a few months).

    getting disability for this disease here is very difficult, but luckily i also have bipolar disorder (lol), which may make it a little easier.

    i am in bad shape now and have no idea how i am going to make it, even to all the local doctors i will have to see. (i have to take public transportation and live far from everything).

    however, i want to stress that i still feel better than before i saw dr. lerner. i still feel that he is my very best hope. i have had the illness for a very long time and getting better will not be simple and quick.

    i sometimes imagine what it might feel like to have my mind back...to be able to think clearly again...to have access to my higher cognitive proceses. it might feel like a person hearing or seeing for the first time....it has been SO long now. i pray it happens. this is almost all i am living for now.

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  2. louiesgirl2

    louiesgirl2 New Member

    I am no doctor, however, if I were have chest pains, radiating down the arm and nausea, I would have hi tailed it to the ER closest to my home. I do not know your history, however, Dr. Lerner in my opinion, had nerve asking you to make that trip knowing how you were feeling.

    As I said this is just my opinion. I am praying for you that all goes well.

  3. ladybugmandy

    ladybugmandy Member

    thank you for your replies, everyone! i feel like i have such great friends here. i pray for you all to improve, too.

    they had a cancellation for the Holter at dr. lerner's office so i will be going next week. i have already booked my hotel and found out that the upper GI tests can be done at a local hospital here fairly quickly, once i get the referral. i am going to use a walk-in clinic this saturday and see if the doctor is sympathetic. if not, i have another doctor i can try further away.

    my fog is bad so i cannot add much to this post, except how thankful i am for your support. deep down, i have a gut feeling that i am on the right track. something is different in my body than before i saw dr. lerner, though i am not able to describe just what.

    the fact that i improved to a '4' a few weeks ago is giving me hope.

    phyllis..the reason i did not go to the ER was because i have done that before. they do an EKG, find nothing, and send me home - after making me wait for hours in a waiting room. they know next to nothing about CFS. its always a waste of time. and i was much too sick to sit up even.

    kelly...i know you have to stop seeing dr. lerner for now but i cannot remember why just now. i hope you can find answers. you have been so kind to me and really have a heart of gold. you also seem to be brilliant, determined, and have a lot of patience!!

    it concerns me that dr. lerner feels that i definitely need valcyte. he said my main problem seems to be HHV6! - and my liver will not cooperate. blah.

    more patience required :(

    much love to you guys xoxoxo

    ps...i had an ECHO but it did not show a PFO.....
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  4. simonedb

    simonedb Member

    say lbm
    I had a regular echo stress and didnt show pfo but i crashed for a week the next day but that wasnt pickd up on the test, argh

    anyway then i had the sort of echo designed to pick it up and it showed i probably have one, you have to have a cfs doc trained do it, did you? or the machine i fergit tht peckerman used picks it up i think.
  5. landrun89

    landrun89 New Member

    I am also a patient of Dr. Lerner. Based on a recommendation by Pam in Dr Lerner's office I have stayed several times at Super 8 Motel, 1145 West Maple, Clawson, MI 48017, 248-435-8881 for $57.35 per night. It is part of Wyndham Hotels and location is good because it is located on on Maple which is the same as 15 Mile Road (as you know Dr Lerner is located at 14 Mile Road and Pierce) It is approximately 4 miles or 8 minutes from Dr Lerner's office.

    I would ask you to be very nuturing to your self when you are being treated, always do less than you think you can, leave a reserve fund of energy for those unexpected events which always happen. Treat yourself as you would treat someone who has CFS. Rest often.

    Best to you

  6. romalaw

    romalaw Member

    Hi Sue, so sorry to hear of your setback, I know how devastating it can be after a period of seemed improvement.

    I just wanted to say a word about painting. Most paint contains voc's which can be pretty toxic to those of us with CFS. Same with the chemicals in the caulk. As you know, our bodies don't detox well and any additional strain on the system can cause our bodies to decompensate. It sounds like your liver is already struggling, so the painting might have just pushed it too much.

    Recently, my husband did some painting in our house. We were careful to use no voc/low voc paint but it still made me sick for a couple of weeks.

    Our bodies are sooooooo sensitive.

    Any way, just some info from my experience.
  7. redhummingbird

    redhummingbird New Member

    Thank you Sue for your updates. I learn so much from you and the people who add to your threads.

    It sounds like maybe the stress of the loss of your boss (I'm so sorry) and then the painting might have contributed to going from a 4 to a 1 or 2.

    It's really fantastic that you made it to a 4. I believe you will get there again and continue to climb that scale. You are so determined.

    I agree with Kelly about the adrenal stress. Chronic illness stresses the adrenals and I guess the antivirals do too? This is something I need to find out about because I'm due to start Valcyte in January and already have adrenal fatigue.

    I think Marti posted on the PFO also awhile back so you might want to check her posts.

    I found out my doctor died yesterday. It's a big loss as I had developed a close relationship with him (this was my local doctor).

    I'll keep you in my thoughts.

  8. chrissy12

    chrissy12 New Member

    Hi Sue,

    I appreciate you posting on your visits to Dr. Lerner. I am sorry you have gone down some. It may be the death of your boss and the painting. Yesterday, I felt better and went to 2 stores and today I feel awful. When we feel a little better, we are ready to move out and it never works for me.

    Dr. Lerner just called me today to change my antiobiotic. My mycoplasma is not going down much and we had to change. I, too, have experienced the chest and back pain. I know it is scary because you are not sure what is going on... I am glad you felt well enough to see Dr. Lerner. Why is going to the G.I. for answers?What other symptoms do you have that led him that direction if you don't mind me asking...

    I still believe in him a lot, like you. I asked him today if he has patients that take this long to get better and he said much, much, longer. I have been in treatment 10 months.

    I am still encouraged to hear you have moved to a 4 for awhile. There is still hope he can help us.

    Take care, Cindy
  9. Slayadragon

    Slayadragon New Member

    Hi Sue,

    When you painted that room, did you move a lot of stuff in it around or do any cleaning?

    If there is a lot of toxic mold in a home, that sort of activity will stir up the spores and spore fragments.....thus making people being affected a lot sicker.

    In some cases, it takes a very long time for them to get better, especially if they're still in that environment.

    I don't know if that's the case for you, but it's a thought.

    Best, Lisa
  10. ladybugmandy

    ladybugmandy Member

    you are right. it's funny..at the time painting and everything seemed to easy...my bursts of energy were so great...but now i wonder if i should have found some other way to expend that energy. it is so hard when there is so much to be done and you haven't been able to do anything for so long!

    i also used "green" paint which had low voc's and little odor. however, the silicone caulk was a BIG BIG mistake. even with a mask...the fumes were very intense.

    i will try and be more careful in the future....

    thank you for your post:)

  11. ladybugmandy

    ladybugmandy Member

    i am sorry to hear about the financial troubles. i live with my mom and she is also elderly and is weakening...so i know how you feel.

    i am glad you are able to take what makes you feel better. i really feel that one must listen to one's body.

    thank you for reminding me that HHV6 makes other viruses more powerful...i had totally forgotten this.

    i did have a saliva test through my NYC doctor and it showed that my hormone levels were very abnormal. i started taking some adrenal supplements until dr. lerner told me to stop.

    dr. lerner did a test - i cannot remember what it was called - but it was normal...so i figured that my adrenals arent working due to a signaling problem (perhaps from infection?) rather than damage (someone on this board suggested this and it sounded right lol). i think it was some sort of stimulation test.

    i am not sure that i received your email but thank you for thinking of me:)

    all the best

  12. ladybugmandy

    ladybugmandy Member

    red....thank you!

    i am very sorry about your doctor! that is awful. i do hope you can find someone else who is symptathetic to your condition - i know it can be hard.

  13. ladybugmandy

    ladybugmandy Member

    cindy! thank you for telling me that he said "much much longer". i always suspected this but i requested a letter from dr. lerner for tax purposes many months ago and said he expected me to recover in a year to a year and a half. i wonder why he said that!?

    i think he tries very hard to keep our hopes up....

    hang in there!
  14. ladybugmandy

    ladybugmandy Member

    lisa! hope you are doing well....thank you for the suggestion.

    there was no mold because we just had mold remediation done a few months ago. we paid a lot of money for the drywall removal and replacement and it turns out it that there was very little mold.:-/

    i even had the air quality tested!

    ugh...when i think of the tens of thousands of my mothers savings i have spent in just a year...i feel awful arghhhh

    the next step will be to remove this old carpet but i do not know when we will be able to afford that!

    all the best
  15. ladybugmandy

    ladybugmandy Member

    hi chrissy! how curious that your mycopolasma is such a problem! i wonder why that is. perhaps that is at the crux of your CFS. i hope dr. lerner is able to finally put it in remission.

    aside from the chest ache, i also had nausea and burning in my stomach....this is why he ordered the GI tests.

  16. Slayadragon

    Slayadragon New Member

    The remediators that I first brought into my house didn't find anything either. It took a huge amount of effort on my part to get them to find the problem (it turned out to be pretty bad), and the only progress that they made even then was to be able to get the house to the point where it would be safe for new residents.

    I myself cannot enter the building again without getting sick, nor can I enter any other building that's been remediated. Other people who have recovered from CFS as a result of mold avoidance report the same thing. Remediators, of course, reported total disbelief that such a phenomenon could be possible (this despite the fact that it is clearly described in "Mold Warriors").

    Insofar as I avoid mold in a scrupulous enough way though, I now am wholly well. It's hard to express how happy I am, both "spontaneously" and in terms of my life prospects. My brain is even almost back to the days in which I was in my rigorous Ph.D. program, which is to say really strong.

    Remediators invariably recommend air tests (useless but lucrative for them) that reveal nothing (good for them because the real estate agents that use them the most frequently don't want problems to be revealed). Insofar as they "remediate" mold, they often do not find the worst parts of it. Mine was buried behind two layers of drywall, for instance. This kind of problem can release huge amounts of toxins even if no spores come out.

    I'm currently working with some other folks on a book on CFS and mold. I'm going to stop bringing the topic up on boards (other than CFS United) until then though. Even worse than your experience is that of a person who tried to clean it up herself (despite our very strong warnings against that) and then got so sick with vertigo that she was unable to get out of bed for a month. This stuff is really dangerous, and handling it in the wrong way can be deadly.

    I'm sorry that you spent so much money on this, Sue. I'm going to have to make it more clear in the future if I do mention mold (again unlikely until the book is done) what to do and not to do, since addressing it in the ways that mold professionals (who have at most a few days' training) recommend is rarely appropriate for those who have real mold illness.

    Best, Lisa
  17. ladybugmandy

    ladybugmandy Member

    wow. you used the term "wholly well" and said your brain is almost back to normal. that is AMAZING. i am just floored. you have me thinking about mold again....

    i live in a condo and since every unit is enclosed by concrete, i am wondering if it is possible to have the same kind of mold issues that a house can have?

    when the remediators removed the drywall around the windows (where the mold seemed obvious), i saw only a little mold. they removed more than necessary and cut away some carpet too.

    we did have a lot of mildew/moisture issues in the bathroom but since the renovation 4 years ago, have not had any. still, it is possible i think that mold could be behind those walls.

    we also have some very minor staining on the ceiling around the windows but replacing that is beyond our means.

    i agree about the air quality testing. it was costly and looked rather hokey to me.

    i think removing the old carpet is a big priority for me but we will not be able to afford this for a long time.

    words cannot express how happy i am that you have your life back and congratulations on your upcoming book. this indeed gives me a lot of hope.

    i have always been of the opinion that, for me, viral infection has resulted in my body's inability to deal with toxins such as mold, etc.....but i am aware that it could be the other way around, too.

    thank you for your post and bravo to you!!!!


  18. ladybugmandy

    ladybugmandy Member

    thank you:)

    i had forgotten about specialk and the abdominal pain. i assumed that it was related to her taking tagamet...?

    i do not take any pro-biotics at all. i take only what is on dr. lerner's list.

    i am glad the hydrocortisone helped you.

    i am not well at all - and i cant explain how - but its a different type of unwellness than before.

    i am confused and frustrated and feel that i am between a rock and a hard place. i am going to have to go to MI 2 more times this month and stay at hotels....its all too much.

    i was going to ask dr. lerner if i could have the holter here. i wish i had but i remember him saying before that holters always had to be done there.

    when i drop the holter off, i am going to ask him if we could discuss the holter and GI results over the phone but i know he will not be comfortable with this because he will want to check blood work.

    when i look back at the times i had to spend huge amounts of money on extra trips and testing, it was always following a stressful event. even minor stress makes me deteriorate but i cant avoid all stress - its impossible.

    i do hope he finds H pylori so the whole ordeal wont be a waste of time :-/

    i dont want to stop seeing him. i know it sometimes takes years and years to improve. i feel he is my only realistic hope and he may retire soon.

    i was hoping that by now i would be going once every 6 weeks but that is not even close to happening.

    i wonder what he does for people who just cannot afford to come but clearly need to and want to. but it doesnt matter really, most of my cost is traveling and cabs.

    this is just a big mess. i will go as long as i can i guess. i still believe in what he is doing.

    perhaps i will improve enough in the year to come and can work part time (this seems unlikely). maybe i can ask him to outline a treatment plan for my local doctor...but i know this is not ideal. UGH.

    thanks for listening to my whining. BLAHHHHHHH


  19. Rafiki

    Rafiki New Member

    Thank you very much for these most informative updates!

    I just wanted to let you know that I was approved by ODSP as permanently disabled with very little fuss. (Perhaps you have private disability and were speaking of that.)

    One simply gives a copy of the Canadian Guidelines to one's doctor and it is all very clear how to go about it. It describes a permanent and disabling illness. You really do need a decent Canadian doctor. I do too but, in the meantime, I see a friend of a friend who, at the very least, respects my opinion.

    Your mother is allowed to charge you rent if you live in her home, I believe. Without special and specific dietary needs, like diabetes or celiac, one gets about $1000 per mo. With rent for a small bachelor in a run down building going for $700 per mo. it's not easy to make ends meet. However, it could make a big difference to you and your mother if you could begin to pay her rent.

    I wish I'd known at the time that one is allowed to have a few thousand dollars but I think it's true. I assumed one had to be destitute so waited until I was but that may not be true.

    So, don't worry too much about getting ODSP. It's easier to get ODSP for ME than it is for MS.

    Best of luck to you!

  20. ladybugmandy

    ladybugmandy Member

    thank you thank you thank you! your post made me feel better. the money pressures are really starting to affect me mentally and likely healthwise.

    all the best