Quick Update – Medical Records & Butrans Patches

10 Jan



Since the passing of my LLMD I was worried about all of my tests that were supposed to be discussed with me at my next appointment, my medical records and if I can still go to that medical center. My mom called the office and there was a message saying “do not leave any messages”. After calling around my mom found out that my medical records are in probate since the doctor did not will any of her records. So I will not be able to get a hold of them or my test results. Lab Corp said they cannot mail me the results and one of my doctors said he probably will not be able to get the results either.

My LLMD was a genius and she knew just by glancing at test results if you had something wrong. She sent out for genetics testing and other test I am afraid no other doctor will know much about or care about. Like testing the T3 (thyroid), only my LLMD seemed concerned with my T3, my PCP said it was mot important to test and refused to test me for it. I hope I can find a new doctor who is as smart and understanding as my last LLMD.

My Butrans patches have been burning my arms now for 2 months. I have burn marks all over my arms and chest. At first they did not burn but now it seems I can no longer tolerate them on my skin. It’s not the adhesive part on the outside but the inside/middle section where the drug itself is applied under the patch. I am going to visit UCSF soon to most likely get Methadone. I don’t really want morphine injections so I think Methadone is my next option. I think I have tried almost every pain killer there is but noting seems to help all my illnesses.

My CFS, Lupus and Arthritis are flaring up so it’s off to my warm bed with my heating pad and BioFreeze for now…..


I hope you all are doing better and finding answers. Don’t ever give up we are all in this together and giving up is not an option. Keep up the fight and  hope you find a reason to smile today.




16 Responses to “Quick Update – Medical Records & Butrans Patches”

  1. karen kramer January 10, 2014 at 11:15 am #

    So sorry to hear about your/my records.  I was seeing her too.  In future, may I suggest you keep copies of all labs you have done.  This is what I have been trying to do for my 30 years of searching for health, and it has paid off more than once, as I have had two other docs die on me. 

     If you have any luck finding another llmd whom takes any insurance, can you let me know, and I will do the same.  It is so depressing starting the search again, being ill and no money. 

    Thanks, Karen at kkramerdc@yahoo.com

    • 49erBry January 10, 2014 at 10:09 pm #

      Thank you, I will let you know what I find out. I am going to a doctor soon who trained under hynote and also was a patient of hers. He doesn’t deal with lyme he’s a retired family doc who specializes in stress relief now. Sorry about the doctors passing on you. Dr Mora was decent but he said I was too complicated and he stopped taking medicare.

      I have copies of many of my tests but these test results were supposed to be given to me at my visit but she passed 1 week before my appointment. So I have no idea what the results are yet and it was thyroid, bad genes, new coinfection..etc. I don’t think many LLMDs knew what Ellie knew.

    • Kate January 14, 2014 at 10:00 am #

      I was also a patient and was in mid treatment! Also share the dilemma of having exhaustive testing which I do not want to repeat. I also require a Doctor who takes Medicare. If you are able to locate anyone would you please share!

      • 49erBry January 15, 2014 at 10:29 pm #

        I have a small list of local LLMDs. I think I will be seeing one in the foothills. email if you would like the list.

  2. Noel Campbell January 10, 2014 at 1:46 pm #

    Try resonant frequency therapy for Lyme to overcome your current problems.

  3. Lemons 'n Lyme January 11, 2014 at 10:15 am #

    Oh Bry, I’m so sorry this is so confusing :(. Good doctors should know to test T3- it took me awhile to find a doc that did but that’s how I figured out my hypothyroidism. More holistic docs and good LLMD’s will test correctly. I wish you all the best luck in finding a new Lyme doc!!!

    • 49erBry January 12, 2014 at 10:34 pm #

      Thanks Victoria. My PCP diagnosed me with hypothyroidism back in 2007 I think. I take a levoxyl everyday since then but my LLMD and LLND both asked that my PCP test my T3 so Medicare will cover it but my PCP’s always say my LLMDs are stupid for wanting to test the T3 they say the T4 and TSH is all you need. But we know that is incorrect. I hope my next LLMD takes insurance so I can test it. Hope you are doing better.

      • Lemons 'n Lyme January 13, 2014 at 9:51 am #

        You’re PCP sounds very annoying! (No offense). T3 is important to check! I take a compounded T3/T4 so the levels of each can be adjusted based on my blood work instead of a standard dose in most commercial thyroid meds. I hope you’re next LLMD can test it, too!

  4. SHERRY SMITH January 11, 2014 at 6:46 pm #

    Thankyou for sending me your new information…………I pray you will feel better soon on methodone,,,,,,,,,,,,,every time I go the the Dr’s they make me repeat my name and then ask me are you going to commit sucide today…………………….because I have to go to dumb dr’s and dont beleive in Lyme…………….Praying for you Sherry we will stay strong……….Keep smiling they are the fools……………..!! 🙂 I hate being on medicade…………..it sucks

    • 49erBry January 12, 2014 at 10:36 pm #

      Sorry Sherry, doctors are so quick to put pain or illness all in our heads. Hope you can find a good compassionate doctor soon. Keep up the fight

  5. Kate January 14, 2014 at 9:54 am #

    I also have Lupus etc and have had great success with Spectrumcare in Napa. Dr. Grigsby and Staff are as “tenacious” as Dr. Grigsby in their field
    (Pain Management). You may want to contact them .

  6. Sheryl Bjerre January 14, 2014 at 10:30 am #

    Hi, yes i have the same issue w a clinic taking possession of all my lyme & co related info, brain tests, igenex etc that i supplied to my GP, who left after 8 yrs. But i wanted to comment on your pain management. I have been seeing a Complex Chronic Pain Specialist in Vancouver since 2007. Seems some of us have horrible chronic pain, depending on length of illness (12 yrs) & i believe Bartonella adds to Lyme pain. Added to joint, bone & muscle pain, to which opiods/opiates are given, is neurological pain which calls for a pain blocker such as gabapentin or Lyrica (i get gaba covered). Ive tried, the F patch, MS Eslon Morphine, Oxycocet ( Percocet), Oxycoden, Methadone (twice),. Im NOT a Dr. I speak as having Lyme, Bartonella & formerly Babesia. My pain specialist told me that of all the opiates Methadone was the most successful against pain. I cudnt seem to go from morphine (150mgs then ) to the required small doses of methadone, w gradual increase. It threw me into a horrific tailspin, however many swear by it. Remember it was first a pain med that was found to help heroine addicts, pple tend to gasp when you mention methadone. A pain specialist can determine climbing up on gabapentin for neuro issues. I discovered that at night adding amitriptyline (Elavil) 50mgs which is actually an antidepressant, however it’s secondary use discovered is combining it w the nightly dose of gabapentin gives one a non distruptive, REM sleep – i used to wake up in pain. I didnt want to add a sleeping pill into the mix, am plsd this works. I also take Cymbalta, an antidepressant supposely helpful w pain. I only notice what it adds when I’ve missed two days. I am on MS Eslon Morphine, Oxycocet for breakthrough pain,, 2100 mgs of Gaba ( i went down from 2700mgs) Clonazepam (replacing xanax) Cymbalta. And i still have chronic pain, am bedridden now. Wishing you the best care, Sheryl

    • 49erBry January 15, 2014 at 10:27 pm #

      Thanks for all of the info. I tried Lyrica and Cymbalta but I may ask for gaba, neurontin and methadone. I hope you can find something that will help get you feeling better. Take care

      • Kate January 31, 2014 at 3:34 am #

        I am also a former patient of Doctor H . I am going to. ” try” Gordon Medical too. I saw the Nurse Practitioner who works there when she worked a with Doctor Hynote. My concern is that they do not take any insurance including Medicare. Like most of us , I have already invested thousands if dollars in testing and can not begin to
        start testing again. I am hoping that their office will be able to have access to some of the Lab Results if we sign a release….
        I am hesitant to “start over” but my medications are running out and I need to make a decision very soon.
        My Lupus Doctor is in SF and she has been very helpful in the interim. The problem is the conflict with the treatments for Lupus and Lyme…
        Thank you for your blog. It is appreciated more than you know. Take care and since I live close, let me know if there is anything I can do to help.

      • 49erBry February 1, 2014 at 1:19 am #

        Thank you. I talked to a few people and I hear they do not take insurance. Not sure if you can submit a bill personally to see if Medicare will cover it like some places do? So far I haven’t heard back from the doctor who said the records are in probate. I really hate to “start over” I know what you mean, it seems you are just getting answers then you go to a new doc and they want to run all the same tests and the don’t know what the last doctor was doing. I have an appt soon with Gordon. Let me know how it goes and good luck with everything.

  7. Kate February 1, 2014 at 10:16 am #

    Thanks so much! I appreciate what you are doing for so many!

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