Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

ABX treatment failure, nothing improving, feeling overwhelmed and powerless

Discussion in 'General ME/CFS Discussion' started by Antares in NYC, Aug 23, 2016.

  1. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    582
    Likes:
    1,648
    USA
    Hi there.

    I haven't posted in these forums much lately. I've had a horrible year so far, and just got even more bad news today. I don't even know where to start, so I guess I will start from the beginning:

    I joined Phoenix Rising three years ago this summer. Both my girlfriend and I had been quite ill, and after meeting a specialist in NYC who ran a bunch of tests and understood our symptoms, we were diagnosed. We had off-the-charts EBV and HHV6 titres, messed up immune panels, and a multitude of symptoms that just added to the excruciating fatigue, sleep and cognitive problems. Since then, we tried all sorts of different treatments but nothing really made a difference (antivirals like Famvir and Valcyte, B12 injections and methylation, tons of different supplements, you name it). We were getting worse every day, to the point that my girl was on and off housebound, and I had just the minimal energy to still work a day job, although people could tell something was wrong with me, as my neuro-cognitive issues continued in free fall.

    Our ME/CFS specialist kept running tests, and looking under every rock to see if something extraordinary popped. And it did: we were both positive for Lyme Disease (both CDC Western Blot, and Igenex tests). I also tested positive for Bartonella. We were given a few months of oral antibiotics, but it didn't do the trick; we kept declining. Our ME/CFS specialist sent us to a LLMD colleague. We waited closed to 5 months for an appointment -that's how busy his waiting list was.

    Almost a year ago we had Hickman central lines inserted, and started the awful odyssey with IV antibiotics under the supervision of the LLMD. We did several protocols involving combinations of IV antibiotics (Rocephin, Azythromycin, Clindamycin, etc).

    Within 6 months of IV treatment, my girlfriend had recovered to just about 100%, a recovery so profound that even the LLMD mentioned it was a very successful story. Around the time of her recovery, she had already landed a pretty sweet job, and has been thriving since then. While she's still working to fully recover her long term memory, she explains in detail how every day her memories seem to slowly come back in more and more detail.

    Things didn't exactly work out the same way for me. None of the IV antibiotics made a difference, so we kept changing protocols every few months. We rotated Vancomycin, Tindamax, Invanz, Levofloxacin, but nothing was making a dent in my condition.

    My neuro-cognitive issues kept progressing, and it was becoming clear that I was in decline. As my coworkers started to notice the slurring of my speech, the memory blackouts, and the increasingly vacant silences, I decided to preemptively open up and tell the team about the Hickman line, the treatment, and the overall nightmare I was going through. While they were all kind and supportive, I lost my job less than two months after opening up about my condition. While the reasons for my dismissal were stated as having nothing to do with my health, one can't help but wonder how much of that decision had to do with my big reveal.

    Things kept getting worse. A Spect CT Scan revealed that I had brain lesions (common in chronic Lyme, ME/CFS and Lupus) and hypo-perfusion (lack of proper blood flow to the brain). It certainly explained the increasing cognitive problems. At this point I have experienced such terrible memory loss that I can't remember large swaths of my childhood and youth. i look at photos of my childhood and it's like they belong to someone else's life. Don't remember much of anything or anyone.

    For the last few months I have been unemployed, increasingly sicker, barely able to cover the medical bills, and still undergoing IV treatment... until today. My visit with the LLMD just left me feeling extremely saddened and helpless. After almost a full year of IV antibiotics, the LLMD called it off. He feels that any of the antibiotics would have made a difference by now, no matter how small. He feels that the lack of improvement would signal that we are no longer dealing with an active Lyme infection, but something completely different, possibly autoimmune. He declared that the IV treatment failed, and is requesting the removal of the Hickman port. He was clearly frustrated.

    So here I am, without a job, without means, feeling worse every day, and even though I hoped for the treatment to improve things, I did not get the same fate as my girlfriend. She improved within 6 months, but nothing even made a dent for me in almost a year of IV treatment.

    I feel that my options are narrowing, and my hope of ever getting better vanishing with each new disappointing treatment. To make matters worse, I feel that we are even drifting as a couple, which is heartbreaking to say the least. Icing on the cake. The moment we did not recover at the same pace, I knew this could have deep consequences for us. I can even understand it from an evolutionary POV, not wanting to be anchored by someone so ill. I'm sure the survival instinct takes over at a point.

    While I sit here in this room, typing this note, tears swelling in my eyes, I feel the weight of the lost time, the wasted efforts, the disappointment of every treatment I hoped would help me, the loss of money and resources in the pursue of health and normalcy... I wonder if my fate is sealed and I'm foolish for keeping the hope alive. This, while I try to figure out how I'm I going to pay rent next month.

    Never in my worse nightmares I thought that things would turn out like this. In my forties, no family, no children, a career declining as fast as my memory, nothing to show for, only sickness and frustration.

    Apologies for pouring my heart in such dark tones, but today really is the culmination of a horrible year.

    I just wanted to ask some advise from whoever has been in this situation before:
    • Should I just have the Hickman removed and stop treatment, or should I fight to continue IV treatment instead? I knew of cases that took longer to cure (I know a nurse that was on IV abx for 18 months before she recovered).

    • Are there any tests out there that can show if my Lyme infection is active? Is there any kind of new testing that could tell the difference between an active infection and a past infection with more accuracy than a Western Blot?

    • I have appointments with two new specialists to further look into potential auto-immune conditions. I have been told I may be dealing with post-infectious autoimmune encephalitis. Each doctor wants to do their own spinal tap, in the labs of their preference, and are not willing to work in tandem. How far apart can I take spinal taps? How much time should I give in between each spinal tap if each doctor wants to run their own?

    • Several of my doctors (including my ME/CFS doctor and LLMD) have suggested that I would benefit tremendously from IVIG therapy. Two of my IgG levels are below the normal threshold (subclasses 1 and 3), and another one is borderline low (subclass 2). Yet none of them wants to fight this fight with the insurance, and keep referring me to other specialists more familiar navigating the unpleasant IVIG approval process with the insurance, since it's expensive and they will try their best to deny it. How can someone get IVIG approved by your insurance in this country? Apparently having low IgG levels and being chronically ill is not enough. What else do they need?

    • I also started pursuing the mold angle, since my HLA-DR test showed I'm at the worse possible level of the Shoemaker scale. This new allergist put me on Nystatin and sublingual drops to desensitize my system from mold (similar to LDI therapy). Week three, no difference yet. How long until something kicks?
    Again sorry for the long rant, but I'm feeling helpless and lonely, and I needed to get it out of my chest. With my awful cognitive problems, it took me a while to type it.

    Thanks in advance for any suggestions or advice.
     
    Last edited: Aug 24, 2016
    TrixieStix, MEMum, Comet and 21 others like this.
  2. frog_in_the_fog

    frog_in_the_fog Test Subject

    Messages:
    253
    Likes:
    498
    California
    It really seems you worked the antibiotic treatment protocols from every possible angle. If your doctors agree, the only thing to do is to keep trying different treatments. IVIG being as expensive as it is does present its challenges, perhaps you will need the services of a patient advocate. As for spinal taps, a family member had one and it took her about a week to fully heal. It is possible this invasive procedure could make you feel worse, but the potential for uncovering a new diagnosis may outweigh the risks. You should not need to go though this procedure twice, you really should get your PCP to step up and help get your other doctors to work together. Did your insurance company assign a case manager to work with you? If you haven't already, sounds like you should apply for state disability as well as social security disability. I hope these suggestions are helpful. While I have been sick for over 10 years, I have only recently redoubled my efforts to seek a cure. I am putting my hope for recovery in Stanford's cfs clinic.
     
    TrixieStix, justy, merylg and 2 others like this.
  3. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

    Messages:
    1,214
    Likes:
    4,527
    We all feel ya.

    I guess it`s possible that you could have autoimmunity towards your nervous system e.g. I would look in that direction, also.
     
    MEMum, justy, merylg and 3 others like this.
  4. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    Yeah, that does seem likely. Testing in that direction does seem like the next step to take. I improved in some areas on IV and oral antibiotics, but still definitely have ME. With the rituximab research showing good results so far, autoimmunity seems like a likely prospect. Low-dose hydrocortisone was also beneficial in some trials, and might make for a good (cheap) test to indicate if autoimmunity is likely or not.

    It's a difficult question. I think it depends on what you can afford and put up with :p Did you ever have consistent fevers and/or hypotension in reaction to the antibiotics? If so, that reaction could indicate an active Lyme infection.

    I was off oral antibiotics after about 2 years of IV then oral antibiotics, and when I went back on them a month later, I was getting the Jarisch-Herxheimer again for a full week - meaning my critters weren't already all dead.

    There is some pretty mainstream immune system testing which can help to indicate if there is an active Lyme infection. The Elispot-LTT (different from other Elispot tests) from Germany might be responsive to improvements. I don't remember though, and it's been a while since I was reading about it.

    Shoemaker's HLA-DR test is pure quackery. He determined his list of mold-susceptible HLA types based on comparing his local patients to worldwide HLA types. This is a fundamental failure in his (unpublished) research, due to HLA types being highly dependent on ethnicity. His figures would suggest that over 85% of Americans are extremely susceptible to mold, etc.
     
  5. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,467
    One possible avenue is touching base with John Aucott. I am sure you know his stance; he is with Johns Hopkins. He is doing the Lyme SLICE studies. He's just north of Baltimore. I think he may be approaching treatment for some of his patients with immune modulators - but I'm not positive.

    It might not hurt just to have his input. But make sure you appreciate his assumptions.
     
    Last edited: Aug 24, 2016
    Marky90, Valentijn and Antares in NYC like this.
  6. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,411
    Likes:
    24,321
    USA
    I do not have Lyme but I am doing IVIG with the goal to attack and decrease several auto-antibodies which we suspect are affecting my breathing and muscle strength and skewing my immune system toward insane allergic reactions. It took me a total of 4-5 months to get this approved with several doctors unwilling to prescribe or take on the authorization process.

    I had to be very creative in my approach and it was a combination of my main doctor, MCAS doctor, and a new Neuro each doing a separate piece of the puzzle which led to an auth for ONE infusion being approved. Then I had a second battle to get additional auths approved and then a third battle to get the infusion center approved. It was not easy and I literally spent 4-5 months on it but it can be done and am happy to give you more specific feedback via PM if you are interested.
     
    Last edited: Aug 24, 2016
    justy, Antares in NYC and AndyPandy like this.
  7. AndyPandy

    AndyPandy Making the most of it

    Messages:
    1,472
    Likes:
    6,626
    Australia
    So sorry you are going through this @Antares in NYC.

    Sending you hugs.
     
    MEMum, Comet, justy and 2 others like this.
  8. ahmo

    ahmo Senior Member

    Messages:
    4,340
    Likes:
    6,528
    Northcoast NSW, Australia
    MEMum, Comet, Antares in NYC and 3 others like this.
  9. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,290
    Likes:
    12,034
    U.K
    Hi, I noticed you hadn't been around in a while. Sounds like you worked pretty hard on that Lyme...its so hard to know when to stop though isn't it? I know in the Under Our Skin Movie one guy talks about close to five years on oral antibiotics before he got back a large portion of himself. Have you considered changing LLMD? Did you do cyst busters etc alongside? Im sure you probably know all this.

    Pursuing IVIG sounds like a great idea to me - I do low dose SCIG and its not curing me, but helps my functioning - although I herx on it pretty bad if the dose is too high (I have clinical lyme dx).

    Are you sure the Bart was adequately treated? is it possible you have other co infections that are not being specifically targeted? Bart is a bugger to get rid of, and causes lots of brain symptoms like you are describing. Lots of people also have Babesia - a nasty one to diagnose and treat.

    Another possibility is Dr Ty Vincents LDI for Lyme - there is a thread on it around here somewhere... (@Sushi ?).

    Anyway, thinking of you and so sorry for all you are going through.
     
    Antares in NYC and sarah darwins like this.
  10. snowathlete

    snowathlete

    Messages:
    3,312
    Likes:
    14,610
    UK
    Sorry to hear you've had such a rough time. I feel for you. I've had similar disappointments myself, having had 10 months of antibiotics and rather than being made better by them, I felt awful the whole time and then got ulcerative colitis for my trouble. I apparently had Lyme too, though that test result never convinced me. And Bartonella, which I may have had, but likely the abx actually killed it off. Problem was that was not really the big problem. You've had a more difficult experience given that your girlfriend got better, but you didn't. I can only imagine that would make it feel much more harsh.

    After my treatment failure, I was quite down for a while. The worse stage of my illness really. I thought about pursuing other avenues like IVIG and anti-virals and so on but ultimately didn't. Mainly due to the difficulty of getting them in the UK but also the cost. I don't think either would have worked, but you never know. I've pretty much accepted I have ME, and I just have to wait, even though I can't function well anymore, that's all I can do. I am glad I tried, because some people can get better, like your girlfriend did, but most don't and that's a reality many of us have to face. Reassuringly, there are some amazing people researching the disease and I do what I can to support them because I think we are close to making breakthroughs and having tests that can help us understand what is going on for each of us on an individual level.
     
  11. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    582
    Likes:
    1,648
    USA
    Thanks for the words of support. It means a lot. I'm really sinking here but not willing to give up the fight.

    Can anyone recommend me any LLMD specialist in NYC, or by extension southern CT and northern NJ, willing to try other abx protocols and keep pursuing a solution to this nightmare?

    While I do believe I may be dealing with the extended damage of years of untreated Lyme, and scheduled to look into my spinal fluid and other studies that may shed light on my lack of recovery, I want to keep pushing the Lyme fight. I know people that recovered after 18 months of abx treatment, and I'm willing to try other protocols, including Dapsone. Any doctors aside from Horowitz that can prescribe Dapsone?
    Thanks.
     
  12. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,467
    I can think of two top-notch LLMDs around there. PMing you.
     
    Antares in NYC likes this.
  13. frog_in_the_fog

    frog_in_the_fog Test Subject

    Messages:
    253
    Likes:
    498
    California
  14. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    582
    Likes:
    1,648
    USA
    Hi @Valentijn,
    I'm starting to believe that at this point I'm dealing with one of two things: moderate ME/CFS, or the resulting damage of having untreated Lyme for so many years, often leading to auto-immune conditions and systemic problems. I really wish there was a clear and reliable test to help us figure this out. I've been reading that nanotrap testing can determine with a high degree of accuracy if your Lyme is active. Is this true? Are you familiar with this technology?

    Regarding the Elispot-LTT that you suggested, is it only available in Germany? Do I need my doctor to request it? Where could I start?

    I'm happy to hear that you felt improvements when taking antibiotics. The interesting thing about my abx treatment is that it made no difference whatsoever. A few months before the IV antibiotics, I did about 4 months of oral antibiotics with another doctor. Neither the oral nor the year of IV antibiotics caused a herx effect in me. If anything, the only things I experienced was the relentless and progressive cognitive deterioration. But no, I did not experience the type of reaction that people here describe as a herx.

    The only time I felt something that awful was when my LLMD added Rifampin to the mix, in order to treat the Bartonella. I'm not sure if what I experienced was a herx or the actual side effects of Rifampin, which has many and quite pernicious, including severe insomnia that kept me up for almost three straight days.

    Wasn't aware of it. I know that according to his scale, I'm at the worst possible level of susceptibility to biotoxins, which could explain quite a few things.
     
  15. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    582
    Likes:
    1,648
    USA
    Hi Duncan, do you think I can reach out to him directly? Is he responsive that way, or do I need to set up an appointment and travel to Baltimore to talk to him? Thanks.
     
  16. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,467
    I think a little of both.

    I imagine he will respond to you, but not in any detail outside of maybe general theory. And I suspect he will recommend traveling to see him.

    Technically, he is about 20 miles north of Baltimore in a Johns Hopkins satellite office. So no Baltimore traffic.
     
  17. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    I haven't heard of it, but I haven't read much about Lyme stuff. Someone else might have.

    It's from Armin Labs. I know it can be ordered in the UK, but I'm not sure about the US. I think they do provide info for collecting and shipping samples (chilled), if you can get the blood drawn locally.

    Probably not Lyme then. It was daily fevers + several hours of not being able to stand up for more than a minute for me. Very consistent and impossible to miss.
     
  18. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,467
    The nanotrap test sounds really interesting. I think it's out of George Mason U. Not sure yet where you can get it, but fairly sure it is available. I don't believe it has been independently validated - but I could be wrong. I thought I read Stanford was using the nanotrap...?

    Abx has not really helped me, either, and my Lyme titers are often rising, i.e. clinically and serologically I seem to have active Borrelia of some sort. So whether one herxes or not is not necessarily an accurate barometer, at least in my book.

    Then again, maybe neither of us has active Lyme, @Antares in NYC . Maybe it's PTLDS - Aucott's territory - and it's a broken immune response. Or solely ME/CFS. Or...
     
  19. msf

    msf Senior Member

    Messages:
    3,190
    Likes:
    4,467
    Antares, I think KDM is finding that the gut is important for his patients who test positive for Lyme, and, since the Hanson study suggested the same for ME patients, it might be worth approaching your illness from this angle. Have you tried different diets, such as FODMAP or Paleo? How about Rifaximin, probiotics, etc?
     
    Antares in NYC likes this.
  20. xrunner

    xrunner Senior Member

    Messages:
    843
    Likes:
    680
    Surrey
    Hi @Antares in NYC I'm very sorry to read of your lack of improvement in your health and also the cowardly inhuman way you were treated by work colleagues.

    I think your doc was right in stopping the treatment. I did an overall three-year abx treatment for Lyme (incl' Bartonella) and my view is that there should be some signs that the abx are working within a few months. Although recovery may progress slowly, some positive signs should be there earlier. In the course of my recovery there were months when abx seemed not to work any longer but after a break sometimes of months they would start doing something again.

    I agree with msf's suggestion. There's a lot of immunomodulation that comes from the gut and that helps reduce inflammation which in turn may cause cognitive problems.
    I thought that two possible reasons of your cognitive decline might be either due to (a) the effect of the abx changing over time your gut flora or (b) to Chronic cerebrospinal venous insufficiency (CCSVI) which has been anecdotally reported in chronic Lyme (as well as in MS) patients. (See further down a couple of links explaining ccvi)
    I suspect that poor blood circulation might be a reason why abx might not be working in some Lyme patients which could prevent abx reaching sufficient penetration in tissues to defeat the infection.
    https://en.wikipedia.org/wiki/Chronic_cerebrospinal_venous_insufficiency
    http://www.ccsvi.org/
     
    Hanna likes this.

See more popular forum discussions.

Share This Page