Garzie, Thank you. Are you in the science/medical field? A couple of years ago I went to the Columbia University Lyme Clinic. What they had to say about TBRF is exactly what you have said. And, yes,...
I had intolerable head and neck ache and fever initially. They were more troublesome than the joints. Joints are the biggest remaining problem. I never had much in the way of muscle pain but have had...
Since I still test positive for Miyamotoi and have seen 2 rheumatologists who can't find any other issues, I am assuming borrelia to be the cause ... as does LLMD. Will see if this next round of...
Hi Running Wild, Absolutely no need for apology. I appreciate your response. Really sorry you've not been feeling great. Yes, lots of antibiotics is about all I have tried. They did away with most...
RW and Garzie, Thank you. I very much appreciate your prompt, informative and helpful responses. Just had the LLMD appt and he does NOT recommend the phage treatment. So ... I'm about to begin...
Wondering if anyone has tried this? I have an appointment with my LLMD this afternoon and plan to ask him about the possibility of trying this new therapy. After 5+ years of antibiotics and...
30 days of Doxycycline 100mg twice daily. They said European studies have shown 150-200mg twice daily is more effective at crossing the blood brain barrier and entering cerebrospinal fluid. I took...
Hi Adam, I went to see them in December of 2019, and for me it was a worthwhile visit. They did Lyme testing through 3 different labs. They also tested for B. Miyamotoi which came back positive....
Dude, Thank you SO much for this post! I am especially interested in hearing Dr. Shannon Delaney speak about Miyaotoi at 5:15 today. In late 2019 I was a patient of Dr. Delaney at Columbia...
I also went many years before receiving Lyme diagnosis. Antibiotics helped me tremendously. I still have some symptoms ... primarily joint related, but most symptoms disappeared within the first few...
Thank you for posting this info!...
runningwild, No, I no longer get those HORRIBLE headaches and neck pain/stiffness. They stopped when I started antibiotics....
runningwild, The doxy that is easier on the stomach is Doxycycline Monohydrate....
runningwild, I, too, have had stomach issues with doxy. Very common problem. My llmd prescribed a doxy that has an ingredient to make it less hard on stomach. Unfortunately, I don't remember the...
aphysicalwreck - hoping you'll keep us posted on how you do with the Horowitz protocol. Sorry you're doing so poorly....
running wild, Columbia suggested 8 weeks of Doxycycline 200mg twice a day and if that did not work, Ceftriaxone 2 grams daily via IV. Both Columbia and my LLMD recommended against the IV route...
I tested positive for b miyamotoi last year when I visited Columbia Lyme. Test was run by Imugen lab. Evidently, miyamotoi is more common in California, where I am, than is Lyme. It's really too bad...
Except I've been told that undue stress can lead to a compromised immune system which, in turn, can leave a person more susceptible to infections, etc. There are many cases of folks who have Lyme and...
Interesting, Girlie. I was also in a very long term stressful situation when diagnosed with Lyme. Thank you for posting the link....
I have TBRF and have been told by two LLMDs that it is treated the same as Lyme ... at least as far as antibiotics are concerned. Perhaps the same is true of herbs....
https://www.sciencedaily.com/releases/2020/06/200617100426.htm This is interesting. Sorry if someone has already posted this and I missed it....
In the area of California where I live the tick testing labs only check for borellia. In some other parts of the state, within an hour of us, there are labs that also test for miyamotoi which has...
saraeli, You were not at all dismissive, nor did I take it that way. The doctor is the one who brought up multiple tick bites because, she said, there had to have been more than a single bite. My...
saraeli, It was just a matter of interest to me. Since I have never been aware of a tick bite, I thought it was interesting that I have perhaps been unaware of 2 tick bites ... or more. Now that you...
I tested positive for Bartonella through Igenex and through a lab back east. A non-LLMD Dr told me it was likely from a tick bite....
Thank you, everyone, for the responses. Much appreciated....
I have been diagnosed with Lyme, Miyamotoi, Ehrlichia, and Bartonella. A doctor I saw recently told me I had to have been bitten by more than one tick as there is not a tick that carries all of these...
I have had CDC positive Lyme IgM since 2017 and have never had a positive IgG. Have same results from 2 different labs. I've never heard of the Lupus and/or RA connection. Perhaps the reason is what...
Funny, I had the exact same thing about 6 months ago. Mine was mid back and a little to each side of the back. Kind of decided I might be getting Shingles. Lasted a month or so and have not had it...
I also had an indeterminate result on the Igenex TBRF test as ordered by my LLMD. Then I went to another doc who ordered a more specific test through Imugen in MA for b. miyamotoi (one of the...
I had a similar experience. Lyme IgM with Igenex was positive for a long time off and and never converted to IgG. Recently had a test for borrelia miyamoti through Imugen lab which came back...
Inspiredby3, Sounds like we must have seen different doctors. The one I saw warned me of herxes. Sorry you had such an unpleasant experience there....
Yes!! I had a CDC positive IgM and was told by ID doc that it is a false positive because we don't have Lyme disease here (California). Go figure....
running wild, So sorry to hear things are really bad right now. You mentioned that you've had better and worse times. That is something important to remember. Hopefully in the near term the bad will...
It was suggested to me a rheumatologist could do it and the test should be PCR....
The physician I saw routinely sends to 3 different labs because of the great variation in results....
Yes, I believe that is, unfortunately, very common. Last month I had western blot tested at 3 different labs … all from the same blood draw. 3 different results....
running wild, I think they see plenty of patients who are not CDC positive. Also, they don't treat. They perform very comprehensive history taking and testing. Most detailed visit I've had. Based on...
running wild, So sorry about your current situation. It is a terrible spot to be in, and, unfortunately, many of us have been there, too. As a last resort, I recently went to Columbia University Lyme...
Have just had my follow up appointment with Columbia and I highly recommend them. I have been, like many of you, struggling/suffering for years. Columbia did comprehensive lab and neurocognitive...
Chapelle, No, I am not in New York. Sorry, but I can't figure out how to message you. If my email is enabled, perhaps you could email me....
Inspiredby3, thank you for the response. I appreciate it. Wondering if you have had CDC positive Lyme tests in the past? Did Columbia test you for Lyme? What was the outcome of those tests? Did they...
Thank you very much for the responses. I am familiar with who they are and what they do. Hoping to hear from someone who has been a patient there....
I posted this some time ago but hoping there are some new members who are able to help. Wondering if anyone has been to the Columbia Lyme Clinic? If so, what was your experience? Thank you...
I know it's awful, but it will pass, Girlie. Vent away and hang in there. Think about what you would say to someone who might post what you did. You are strong and will get through this. Sending lots...
I had terrible dark circles and significant puffiness at my sickest. It still comes and goes depending on how I'm doing. Never had the yellowing/discoloring. When I doing better, the dark circles and...
Hi Rudiger, I also live in the Sacramento area and have had no luck finding a doctor nearby. The best bets seem to be in the Bay Area. A couple of weeks ago someone posted a similar request, I think....
If you learn of someone, I, too, am interested. Thank you!...
Dude, #2 and #4 did not happen at the same time. It was 3ish months between the two. It was a similar duration between #3 and #4. And it was about the same, 3ish months, between #5 and #6. My Mercury...
Sheesh exactly, Girlie!! Damned if you do, damned if you don't....