It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lyme Disease Message Board

  • Suggestions for a Chronic Persistent Neurological Lyme Sufferer

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 07-17-2018, 02:28 PM   #1
    JAS01
    Newbie
    (male)
     
    JAS01's Avatar
     
    Join Date: Jul 2018
    Location: Brooklyn, New York
    Posts: 2
    JAS01 HB User
    Suggestions for a Chronic Persistent Neurological Lyme Sufferer

    A brief personal history.
    When young I spent countless hours in the woods, wading through ponds, small waterfalls and brush; searching through abandoned farm structures, climbing fallen trees, and of course walking along the stacked stone walls.

    At age 6 I came upon a small itchy bump. I scratched at the bump, eventually pulling out a small insect which fell into the book I was reading. I recall throwing out the finding.

    Flash forward a year and a half, vacationing with the family I remember my parents cutting a trip short, because the doctor’s office called and said that I had been diagnosed with Lyme disease. It was the summer of 1987. I had been complaining about a stiff and painful neck and had been developing ever worsening headaches that would come on as a wave of searing pain and deafening whine. I was taken to and seen by a dr. I was given 14 days of Amoxicillin, being called back every few days for further blood tests.

    Two years later in 1989 I came down with identical symptoms and was treated with another 14 days of amoxicillin . In neither incident of Lyme was a rash ever present.

    In 1991 I was diagnosed with Crohn’s disease after a year of worsening stomach pain. Crohn’s and Colitis runs in the family, so my parents naturally just thought this was an early onset of our unfortunate family heritage, as most develop Crohn’s in their later teens / early 20’s. Much of my teenage years were focused on dealing with the stomach illness. Multiple hospital visits, feeding tubes, a cabinet full of medicine. Nothing seemed to work except, unfortunately, prednisone which nullified the swelling and pain, and unfortunately also stunted my growth. I was way well undersized in my class, but at least I put on weight and could keep food down. Stopping prednisone caused the symptoms to come flooding back into my life. Starting prednisone pushed them down again.

    I got depressive mood disorders and anxiety in my mid to late teenage years along with growing animosity between me and my parents. It was assigned to ‘teenage angst’ and stress having to deal with being a sick child. I was put in behavioral therapy. Thinks got worse before they got better. Paranoid thinking, delusions; I felt I was losing my mind… I was losing my mind. I didn’t trust my friends, my family. Felt that I was isolated, that everyone was against me. I was always exhausted, always on edge… I was panic stricken.

    I started college in 1998, and shortly enrolled myself for therapy at the University. I was prescribed Paxil, which helped greatly. Clearly, I was just a depressive, I had a mood disorder, maybe some mild personality disorder. I graduated and continued therapy on and off to this very day. Flash forward to 2008, now fully insured I decided to follow up on a feeling that had been nagging at me for a long time. What if Lyme was still somehow responsible for many of my ills? This I guess is when I really entered the realm of the ‘lymelands’.

    I was referred to an Infectious Disease specialist, a neurologist, an epilepsy specialist, an endocrinologist, a psychiatrist. I was given a 3T MRI of my brain, showing areas of sclerosis. I was given an hours long neuro-psychiatric evaluation which showed various areas of impedance with visual memory and recall. I was administered a 3-day epilepsy study at NYU Langone to determine if I had Epilepsy; hooked up to dozens of wires connected to an EEG. I was given a spinal tap.

    The spinal tap is what was proved to be most fruitful in the long run, as the test showed that there were in-fact Lyme antibodies in my Spinal/Brain fluid. The doctor overseeing the study (epilepsy specialist) decided that it was best to continue perusing drugs to rule out epilepsy, regardless of the fact that the EKG detected no sign of seizures. Many drugs were administered, nothing seemed to help. The infectious disease doctor ordered a 5-week course of IV Rocephin, sequentially increasing the dose up to the last week. No further treatment was prescribed thereafter, no major change was detected by me. Disgusted by the whole system, and drained by the co-pays and co-insurance, I walked away from what I felt to be a fruitless hunt and found comfort in Anti-anxiety medicine.

    As 2009 began, several disturbing things began happening. At times of high physical or emotional exertion, I would sometimes experience some degree of hallucinations or visual/perceptive abnormalities. I could feel like I was floating on a river, or wading waist deep in water when walking. I had trouble focusing, feeling like I was both 20 feet and 20 inches tall at the same time. Other times during an attempt at strong concentration I would get stuck in a train of thought, not knowing how to transition out. It’s almost as if I forgot how to speak English. I could, of course, still speak but as I did, it was if I was watching myself from a hidden inside place, like I was a passenger in another person. In both cases, the only thing that reset me back to ‘normal’ was a period of sleep. I eventually again perused treatment for Lyme, this time to an Internist that I found. While not a fully-fledged LLMD, he did treat many many cases of Lyme and was still covered by my insurance. So began my long run of Doxycyclene, 18 months in total at 400mg/day, with a 4-month run of ceftin mixed in the middle. This was also the longest period of relief in my adolescent/adult life. My thoughts became clearer, my mood stabilized, I could focus. I was able to relax and have fun. Sure I turned into a lobster when exposed to sun, but I was legitimately happy. No more arguments with myself, no more noisy thoughts constantly racing through my head. It was determined that I was healthy enough to come off treatment.

    The decline was slow, almost un-noticeable.
    It wasn’t until 2012 that I further pursued treatment for my chronic Lyme. I found a LLMD who naturally did not accept insurance. This doctor saw me for the first appointment and assigned me to one of the RNs in the clinic who prescribed 5 Months of Zithromax, overlapping 10 months of Amoxicillin, and 3 Months of Mepron. A low sugar diet was also prescribed, specifically no simple carbs. While I slimmed down magnificently on the new diet, I guess I expected more of an obvious and immediate improvement in my condition. It was naÔve and arrogant, I now understand, but I thought that if I spent the money on what I was told was the Top-Doc for Lyme, an unmitigated eradication of my disease would be imminent.

    Since the last treatment, I’ve had a steady decline in overall well-being. I chalked it all up to not being able to handle stress. I’ve been in behavioral therapy for years now, on every type of SSRI, SSNRI available, but nothing really works. Many a time I’ve gone back to the Lyme theory, but decided not to open that worm-hole of obsession again, digging through online forums and wading through conflicting theories of conspiracy on both sides of the argument.

    I guess what I’m here for is to ask the advice of the group, where to go from here?

    Last edited by Administrator; 07-19-2018 at 08:36 PM.

     
    Reply With Quote
    The following user gives a hug of support to JAS01:
    tess201 (07-19-2018)
    Sponsors Lightbulb
       
    Old 07-19-2018, 04:02 PM   #2
    tess201
    Senior Veteran
    (female)
     
    Join Date: Aug 2013
    Location: NYC
    Posts: 1,008
    tess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB User
    Re: Suggestions for a Chronic Persistent Neurological Lyme Sufferer

    Your story sounds like yet another case of lyme disease being mishandled. I'm thinking (from what you've said) that most all of the problems you mention stem from untreated, under treated or mistreated lyme disease.

    LD is a very complex and serious infection. It's not just about swallowing a bunch of antibiotics. Detoxing is vitally important or else we would just feel ill all time time from the die-off. You also need to be tested for co-infections. LD can affect every bodily (and mental) system. Running from specialist to specialist to attend to these various ailments will not get to the core of the problem nor do they usually even solve the symptoms, because they invariably stem from the lyme infection.

    The longer one has been infected, the longer the treatment. For those of us with late-stage chronic lyme, this often means a lifetime of attention to LD. I would say you definitely need on-going treatment but I understand your LLMD has released you. You could look into alternative, which many of us have used successfully. You could also consider seeing a Naturopathic doc, with a history of working with lyme patients. And, very important, you could continue educating yourself about this disease. Your own research will be immensely helpful in pointing you in the right direction. I know it's often seems easier to just have someone say "Do this" or "Do that". But there are so few in the medical community who really understand lyme. Those who have or have had LD are a tremendous resource. You might look for lyme support groups in your community.

    Sorry I couldn't be more helpful with suggestions. I feel for your situation and hope that you can find the help and resources you need.

    Tess

     
    Reply With Quote
    Old 07-19-2018, 05:44 PM   #3
    JAS01
    Newbie
    (male)
     
    JAS01's Avatar
     
    Join Date: Jul 2018
    Location: Brooklyn, New York
    Posts: 2
    JAS01 HB User
    Re: Suggestions for a Chronic Persistent Neurological Lyme Sufferer

    Thanks so much for the response Tess. Hearing about success stories and personal experiences keeps me going.

    Iím committed to go back to an LLMD, with 100% dedication to attacking this head on. Iíve been reading books and forums about personal experiences with Lyme and treatments and new research about treatments.

    The trouble Iím having now is finding the right doctor. I understand most if not all LLMD donít take insurance for obvious reasons. I also understand how much money it will cost me for the type and duration of treatment I require and am willing to find ways to make it work. Whatís giving me pause is the wealth of negative reviews on most of the LLMDs in my area.

    Itís a scary position, and I feel frozen.

    Last edited by Administrator; 07-19-2018 at 08:39 PM.

     
    Reply With Quote
    Old 07-20-2018, 05:57 AM   #4
    tess201
    Senior Veteran
    (female)
     
    Join Date: Aug 2013
    Location: NYC
    Posts: 1,008
    tess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB User
    Re: Suggestions for a Chronic Persistent Neurological Lyme Sufferer

    JAS01,

    I understand your frustration. You live in an area where there are a number of LLMDs. I hope you can find one that you feel you can work with. The most important thing is not to stop treatment because then you give the critters the opportunity to proliferate. Oil of Oregano is a natural antibiotic that you could be using until you decide on someone (and during tx as well!). There are many other things that can be used as an adjunct to abx treatment.This book is about the Salt/C protocol but has a great section on various detox potions and when and how to use them.The Salt C Plus Protocol for Lyme Disease Infection by Marc Fett. Detoxing is vitally important in treating LD but it seems very few LLMDs emphasize this. Again, your own research will serve you well.

    Tess

    Last edited by tess201; 07-20-2018 at 05:58 AM.

     
    Reply With Quote
    Reply Reply

    Related Topics
    Thread Thread Starter Board Replies Last Post
    New To Chronic Lyme - How to Treat Lyme Related Hearing Problems? Coyotesdawn Lyme Disease 6 09-21-2016 11:19 AM
    Chronic lyme symptoms Gamingdog Lyme Disease 1 10-31-2013 05:21 PM
    So, I might have lyme, but I caught it very early, suggestions? NTNJ1992 Lyme Disease 14 06-23-2012 11:14 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 05:01 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!