Antares in NYC
Senior Member
- Messages
- 582
- Location
- 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:
Thanks in advance for any suggestions or advice.
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?
Thanks in advance for any suggestions or advice.
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Did you ever have consistent fevers and/or hypotension in reaction to the antibiotics? If so, that reaction could indicate an active Lyme infection.
