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Update on Linda G’s Story

October 20, 2011 By: lindag Category: Best Practices, F-Zymes, Linda (Lindag), Morgellons

I mentioned in my story that I do have Lyme Disease and coinfections, including Bartonella. I have started in the last month treating with my LLMD once again. I am taking Doxycycline and Rifampin for the Bartonella. Most likely I also have Babesia, but if I treat for that, it will have to be later. My body can only do so much. It turns out taking these two drugs is not an easy affair… as I am learning more it turns out that both drugs should not be taken when eating certain foods or taking certain health supplements. Nor should they be taken together. It has turned into a rather complicated affair just trying to figure out when during the day to take each of this to get the full value out of the medications. I am going to go to a support group meeting tonight in Oakland, so I am very interested in learning as much as I can about the whole process. I am especially interested in the statistic that 90% of the people with Morgellons also have Lyme Disease, and I am assuming coinfections as well. How much of what we have are the coinfections doing their part? Recently I am starting to grasp the idea that perhaps the Lyme and coinfections are attracting these organisms to us… essentially are we giant magnets for a variety of infestations, whether it be an actual bug, or bacteria, or fungi? It is unknown to me at present. But, even in the last few weeks I am feeling less crawling, biting, and no itching whatsoever. I know of people with Morgellons who have done every medication imaginable for Lyme Disease, who did not lose their lesions, etc. So maybe there is more to Morgellons than Lyme Disease and coinfections, but shouldn’t we at least treat these illnesses if we have them first and see what remains after that?

11 Comments to “Update on Linda G’s Story”


  1. There is one other thing I forgot to mention. I am part of a Lyme Yahoo group now in California where I live. Many of the people in the Lyme group are being tested by Fry Labs… it turns out that many people with Lyme Disease have a new parasite which was recently named… Dr. Fry of Fry Labs is treating some of the people with this particular protozoan form parasite. I want to also mention that I was tested by a lab called Metamatrix back in 2009 and that lab found a parasite present taxonomy unavailable (also a protozoan form). Could this be the same parasite found among other Lyme Disease sufferers? I suspect that it is.

    Dr. Fry believes this parasite causes a biofilm (which I have) and he has a treatment for that. I have not found out about it as yet. This may be key for many of us. The last time I treated with Doxycycline this biofilm became more prominent. I don’t know as yet what the relationship is if any from a Lyme Disease biofilm and a biofilm created by this new protozoan form.

    This is just a FYI.

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  2. In October, 2012 I started taking herbals to treat the Lyme Disease and Bartonella. Those herbs consist of Banderol and Samento for the Lyme and A Bart for the Bartonella. Banderol and Samento supposedly kill the biofilm form and cyst form of Lyme Disease. I noticed an increase in energy with these herbals that I did not get from the antibiotics and a great sense of well being for several months. I ran out of the herbs and decided to take a short break once again from treatment. I was also taking Chinese herbs from Sunrider–Calli tea and NuPlus. My husband and I really felt great with this combination of herbs. By the beginning of December I felt a little manic, almost too much energy and was having difficulty sleeping. Apparently this is common with the die off according to Dr. Ross (LLMD in State of Washington). I had not been consistently treating candida which can increase even with herbals. I have yet to get back on the herbal treatments but am now taking Fluconazole and probiotics at night. For some reason the probiotics help with sleep and I am sleeping better since starting to take probiotics at night time. In January I came down with the worst flu/cold combination I’ve ever experienced, but now at the tail end of that… my biting sensations on the feet still continue, albeit very few symptoms now. Most of what I get are occasional little biting sensations.

    In January, 2013 it was announced some progress in research on Morgellons. It is looking more and more like Lyme Disease in the form of spirochetes are to blame for Morgellons, although there are probably other factors involved as well. One of the researchers said that the scabs and dermis of the volunteer Morgellons patients who sent in samples contained spirochetes, among other things, including mite eggs, and other insect parts. I am hoping that this research continues to go deeper into the cause of Morgellons and isolate more effective treatments.

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  3. Hi lindag,

    Is there any way to get in touch via message? I don’t know how these boards work but I live in the east bay and have been seeking a support group for lyme and potential other parasites. Can you post links to them here, perhaps? Any feedback will be great. Thank you!

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    • Hi, have you tried any of the support groups listed in the second box in the left columnJ? I haven’t updated it in a while but some are probably still active. Also every state has a lyme support group in Yahoo groups. The group names follow this format:

      Statename-LymeSupport

      You can also go to Yahoo groups and search for more Yahoo-based,. You WILL need a yahoo account (free of course).

      In addition, you can google and join Topix, which has, as you can tell from the name, many topics. Shop around to find the forum within Topix that seems to focus on your greatest concerns.

      Then google “lyme groups online” and see what you find.

      I have had this since 1988, which is why I might not ever get rid of it. I quit adding up the $ after I killed my savings and the total passed $150K. I have tried every primary protocol that I am willing to try because the last two made me much worse and I haven’t come back from either setback. In my case, I had to accept that I MIGHT never get rid of these, and decide whether I wanted to continue to devote every penny and waking hour to it. I decided that if this is my life, I am going to live the best I can. So 9 years ago I started hunting on my own. I had hunted with my ex and it was the day I carried my first gobbler out of the woods that I got this. I enjoyed hunting on my own, and no, it did not make me well, but it made me HAPPY. Then I realized that I had accomplished what I wanted to accomplish by hunting alone, I had discovered that though I like it, there were other things I wanted to try and time is wasting. I always wanted to design and build furniture, and I am an artist. We had a home flood that got me off the computer (which is why I don’t maintain this site like I once did) and working with my hands again. Now I still have the day job, expect to retire in about three years, and design and build furniture, paint the furniture, and paint on canvas. In addition, I have involved myself in civic service activities. Not existing ones, but starting new ones where I and others see gaps or needs. It is so satisfying that I maintain a high level of serotonin that totally offsets the depression this disease used to feed.

      All of that said, I am pretty sure you have less time with this than I do. Almost everyone (not everyone, of course) does. And what I have discovered over the years is that the sooner we realize and accept that (1) the problem is parasitic, (2) we are on our own, (3) my recovery is on me for that reason (thus the $150K for my own R&D), and commit to any of the protocols that have gotten others well, the sooner I will get well. Also, the less time in this, the easier it is to get rid of it. They get more established as time passes. The greatest tragedy of all is not that doctors do not accept it, but that we do, which delays our decision to attack it with all we’ve got.

      Whatever you do, include something in your routine that gives you joy. I don’t care if your symptoms are raging. And the thing that helps me most is helping others. I don’t have to go into their home, or hug them, or ride in their car or vice versa to do that. I have boundaries but they are no one’s business. So I really do still enthusiastically accept invitations to people’s homes. I JUST DON’T EVER GO. And if for some reason I cannot get out of it, I do not linger. There is no need to explain. I just smile warmly say I need to go, that I will see them later, AND GET OUT, lol. I don’t volunteer more information. If they ask, I either don’t ask or if they are persistent, I give them a longer answer, but no more information: “I just have something I want to do before it gets dark” or something like that. If they get really nosy, I wrinkle my brow at them and change the subject. And chances are I don’t let myself get in a situation with that person again.

      I do not keep up with the protocols anymore. I keep up with my life. I do care about those who still suffer, but I must LIVE what life this disease has left me, and the life it has left me happens, as it turns out, to be pretty good. No, some of the details of my life would not be understood by most, but IT AIN’T THEIR LIFE. It is my life.

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      • Hi kajay,

        I really understand what you are saying about the choice to live your life as best you can for the remainder of it… you have been such an inspiration to me for all that you have done, so I thank you once again for that and respect you and your choices. I hope you can retire in 3 years and continue to do your artwork.

        I’ve been attempting to do some of the coinfection treatment outlined by Stephen Buhner, herbalist. My LLMD recommended that I take antibiotics and take some of the Buhner herbs in combination with the antibiotics, so that is what I have been doing, along with Serrapeptase and NAC for biofilm. I am treating the cytokine production which is terrible with Bartonella treatment. My memory is really giving me a lot of trouble now unfortunately no matter what I try (this really worries me)… and I often can’t recall names. I’ve recently take the MTHFR testing from LabCorp and waiting for results on that test to see if I have the genetic problem with absorption of B vitamins and detoxification of toxins.

        I continue to pursue my spiritual interest, practicing and studying along with a meditation group. My daughter and grandchildren will be here during part of the summer visiting from Texas. This always involves a lot of cleaning and creating safe good space for them. They will be here in July for 6 weeks. We plan to go to Yosemite and do other things too while they are here, but I never know what I can do now… I will go on the Yosemite trip, but not sure how much I can do while they are here. I can’t keep up with others any more, so I’m challenged to say “no,” I can’t do that or I need to be resting in bed today. It is so easy for me to say “yes” when I should say “no.” After all these years this is still a huge issue for me.

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    • Hi oakem,

      There used to be a group in Oakland that met once a month on a Thursday (in a tall building on Broadway). I only attended it one time, although I thought it was a good group. The people there had all the same complaints I’ve experienced over the years and it was very interesting. The group was huge and in the range of maybe 25-30 people in the room. I was glad my husband and I got there early to get a chair to sit in. I had heard about the group through the California Yahoo group online. Do you belong to that Yahoo group? I still belong to that group, but don’t always read posts, so have my settings set to digest, which means that I cannot post, but I can read posts. I’m mostly reading posts from Bartonella yahoo group since that seems to be my primary infection along with biofilm. I do have Morgellons, in addition to Lyme and have been treating biofilm for the last few months or so with Serrapeptase, NAC and other recommended enzymes. I am also on 3 antibiotics and numerous supplements. I still see a Lyme Doc regularly who has a practice in Northern California.

      How am I doing? I’m not sure… some days I do okay, but other days I feel moderately disabled. Fortunately for me I do not have to work outside the home and have been deemed disabled for years. I’ll see if I can find info for you on the Oakland Lyme Support group and will respond here with any information on it that I find.

      Lindag

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      • I just looked for support groups for you in East Bay… there is one called L.E.A.P.S. in Oakland. Meets every 3rd Thursday, 6-8 pm, Kaiser Hospital, Mosswood Bldg, Rm. 1130A/1171, 3505 Broadway St., Oakland. Park under Mosswood Bldg or nearby side streets. If you park below building, tell the valet you will be staying late so you keep you keys.

        I also noticed when I Googled Lyme Disease Support Groups in East Bay and other groups came up also for individual cities. You might want to check that site too.

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  4. I wish I could click LIKE on your posts, Linda, but I haven’t figured out how to add that to the site yet without violating everyone’s anonymity, which I WILL NOT do. So here you go:

    LIKE LIKE LIKE LIKE LIKE LINDAG!!!!

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  5. Hi Kajay and others,

    The last time I wrote was about what was happening during the summer. The summer of 2014 was interesting with my 32 year old daughter, grandchildren, and a young German girl staying with us. We did a lot of wonderful things last summer and we lived fully. In July, my son-in-law lost his position in the Air Force after 12-13 years in the military and so the family of 4 relocated from Texas to California, where they are presently living with us. Both my daughter and son-in-law are looking for jobs. They have lived in Germany for 5 years prior to Texas location. My son-in-law is more comfortable playing games on his iPhone and reading fantasy novels than really searching for a job. He is extremely passive and introverted. They have been here for 3 months and they have no $ coming in. It is quite frustrating for them. Our place is very small, but we’ve accommodated them as best as we can. If they were not here, they would be homeless.

    The other thing that has changed is that my daughter and I both chose to have weight loss surgery. I’ve been overweight most of my adult life, so I chose to have the surgery referred to as the sleeve gastrectomy where the stomach is partitioned off. I thought a lot about doing this surgery this before I had it done because no one I could find that has Lyme Disease that I know of has done this surgery and I did not know how my energy would be post-surgery. I had the surgery on December 8, 2014. My daughter had her surgery in Texas and is 4 months out from surgery. I’m a little more than one month out from surgery. My energy remains about the same as it was pre-surgery, and I can do a lot at this point, but tire easily as I did prior to surgery. At 66 years old, and with Lyme Disease, things are not perfect health-wise, but the surgery will help, and is helping to make me more able to exercise and walk, rather than hinder. My diabetes is totally under control. Currently I am not treating Lyme, Bartonella or Babesia. During the summer I was getting injections of an antibiotic from the UK, a new expensive one used for resistant bacteria and it helped quite a bit. My husband was giving me these painful injections 4x/week with 3 days off.

    My Morgellons symptoms are minimal at this point, and I no longer believe what I have are mites biting my feet. Any occasional crawling or biting sensations come and go, but the symptoms are quiet, especially during the colder weather. I worried about my daughter and her family moving in with us for a while, but they have gotten nothing from our house. I just simply don’t worry about because it is something I have no control over. I’ve done so much in the last 7-8 years to the house and nothing can be done now to the house. I too believe this is a parasite of some sort but who knows beyond that. I have accepted that I will have this the remaining of my years on this earth, but it does not seem to me that it is contagious at this point in my experience.

    Sending much love to all. Lindag

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  6. Things are pretty much the same here since January. Symptoms come & go. My weight has gone down post surgery so have more energy. I have not been treating the Lyme Disease, just waiting to see how a friend does with her latest thing she is trying, which is hemp oil. If it hps her I might try it also !!

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