Dismissing doctors: How do you find a doctor who can help?

I gave info on the fact that testing is interpreted differently by different doctors. Number of positive bands (CDC and most docs) versus bands specific for Lyme (LLMD's, ILADS, Igenex et al). A "Lyme literate MD" may also read tests as negative, but they treat anyway based on symptoms and history, right or wrong.

I hesitate to recommend anything honestly. I spend 6 years being treated by a Lyme doctor and the treatment should have been stopped. The antibiotic triggered lupus and affected my gut and immune system so that I have multiple food sensitivities.

So I posted in a neutral fashion. For some, three weeks at a certain dose of, say, doxycycline, might not be enough to avoid chronic problems, but over the years I watched in wonder as so many friends have actually gotten better with that regimen. In the end, I accept my chronic symptoms- better than the meds- and I wish I had stopped sooner.

@windyshores Yes doctors do interpret things differently. That is what makes it so difficult to be a patient when the same symptom can be caused by different problems . I'm glad you shared information about Lyme disease because that is important for people who have been bitten by ticks. It is also true that some patients do have pain and feel more pain chronically, and it may not be related to anything specific, like the Central Sensitization Syndrome that Rachel mentioned. That is an escalation of pain signals and the way that the brain interprets things. A Lyme disease doctor can get it wrong too and over treat for something that isn't Lyme. A patient could have pain from a nerve problem or spine problem. Lyme disease can easily be missed too.

I think the best we can do as patients is pay close attention to our symptoms and medical history. Keep copies of medical records and look up the things that doctors say about us. That tells you what they are looking for, but it may not be the whole story. You can find yourself later with a clue that was missed that helps someone else figure things out. I have food sensitivities too and stopped eating gluten when I figured out through trial and error that it was causing issues for me. That was over twenty years ago before a lot of doctors knew about Celiac disease and then it was considered controversial. Back then I asked to be tested, and my doctor said no because I looked "too good". I think all my food allergies and sensitivities came about because of what gluten was doing before I caught on; it's the leaky gut issues where partially digested foods are absorbed into the blood and train the immune system to attack.

For sure antibiotics affect the gut because they kill off beneficial bacteria too. Probiotics do help replenish normal gut bacteria. I have had good results with doctors who are in the environmental medicine specialty. It was one of these doctors who told me that old silver dental amalgam fillings can cause thyroid problems like Hashimotos. At first it sounded crazy, but the results of my blood work really confirmed the relationship. My antibodies attacking my thyroid were off the charts and couldn't be read at all until after the silver fillings were removed and then it was a low level, but still present. I also had some old root canals and crowns that put other metals into my body. Eventually all that was removed and replaced with non-metal bio-compatible Zirconium implants and crowns, and doing that improved my health a lot immediately. Now, the same blood test does not show Hashimotos, it is borderline at best. My allergic asthma improved a lot. All of this reduced the load on my immune system. That is just my reaction, and another person may not react at all to these things.

My food sensitivities also changed for the better and I can now eat things that previously caused problems. My doctor told me that treating allergies (allergy shots) helps reduce the inflammation in the body, so it tends to help other issues.
It helps to consider the big picture of everything that could be affecting our health.

To search for an Environmental medicine provider, here is a link.
https://www.aaemonline.org/

Windyshores, Since you mentioned having Lupus, is there anything that you can do that would help your symptoms?

Just want to say that gluten sensitivity and celiac are different things. Celiac sufferers cannot tolerate even microscopic amounts of gluten. It is an autoimmune disorder, not an allergy or sensitivity.

I don't really need advice on my issues since it has been 25 years' journey at this point 🙂 I am all set, or as all set as I can be. But @mahenoor108 needs advice.

@windyshores Thank you for your comment. I wanted you to know that my responses are written for everyone who reads the posts and they are general in nature. That is what is so good about Connect because in addition to the members who engage in conversations, there are many more people who read the posts seeking information. I try to share my experiences as a patient to help others who may have questions about similar things so I can be helpful to anyone who is interested. My comments are not intended to be advice to anyone, so please do not perceive it this way. I make sure that my language is not constructed as advice, but rather sharing information in the topics that are discussed from experiences or medical literature. My comments about gluten sensitivity and celiac disease simply said that these were not as well understood twenty years ago as they are now, and my comment was about my experience giving up gluten in my diet. I did share information about the American Academy of Environmental Medicine because doctors in that field can be helpful with autoimmune diseases, as was my experience when I benefited by overcoming an autoimmune thyroid disease.

It is impressive to me how some people, like you and others on these threads, can stay the course until you get answers when something just doesn't fit the diagnoses or explanations given. The New York Times runs a Sunday article featuring a different patient each week who's dealing with a medical mystery. People from all over the world write in to suggest what it might be from their experience sharing similar symptoms but who were able to finally get accurate diagnosis and treatment. One person's medical mystery was solved by a med student in Italy, working lart-time for a doctor whose specialty included this rare illness.

Thank you @callalloo Thank you for your kind words. That sounds interesting with the New York Times. It must be a good learning experience. I'm glad that you find a benefit in Connect. What brought you to Connect?

I missed this post, sorry to reply belatedly. And what a handsome horse in the photo you attached!!

Alas, what brought me here was a Bad News Biopsy and resulting lumoectomy last October. Followed by a Good News (I hope reliable) OncotypeDX genetic recurrence low risk score. I was struggling with taking a recommended anti-estrogen aromatase inhibitor and researching anything I could find on with respect to nasty side effects. Then decided, though I declined the drug, to learn more about preventing bone density from real people doing the same search. Mayo Connect has been a great source of information.

I sympathize with the dilemma but suspect that doctors can't just test for everything. Aside from insurance companies unlikely to reimburse for that, thus the expense to you likely, but there is some logic in ruling out consecutive most-likely diagnoses as being good medicine. And doctors are trained that way, to consecutively rule out most likely conditions. Then there's the issue of specialists, many of whom have a very narrow focus so cannot easily back off and take a different broader perspective. Then there are some doctors whom even other doctors consider brilliant diagnosticians. It's as if they just see symptoms and the related human body from a different perspective entirely. I learned of one once by asking two pharmacists which doctors they see customers improving after a long decline and changing of doctors. It's hard to have to search for the answers at a time when the effort is another problem. Here's hoping that something falls into place, makes sense and is easily treatable.

@callalloo Awe thanks, Callalloo. I think you may be referring to my avatar photo with my older horse? He will be very happy to know that you think he is handsome. He is retired now, but he has a younger "brother" who has taken over the job of trail horse for me. They are both Tennessee Walkers and trail riding has been great for building core strength for me.

I'm glad your genetic test indicates a low risk of reocurrence. That must ease your mind a little bit. Is there an immunotherapy that could help in your case? I ask that question because my husband had a stage 2 melanoma on his hand that was completely removed by surgery, and at that time he could have participated in a clinical study that would test using the same immunotherapy that is the standard of care at stage 3, and use it earlier at stage 2. The standard for stage 2 at the time (because it hasn't spread) was no further treatment beyond surgery. We found out that the study determined this should be a new standard of care for a stage 2 melanoma because it was 25% more effective than no treatment. He didn't participate in the study because of the distance and traffic headaches of commuting into a major city every week right at the beginning of the pandemic.

I think it is always good to ask what the options are and if there are other choices that would be effective in your care. You mentioned bone density. That can be a serious issue later in life if you loose too much. My elderly mom has severe osteoporosis and has had a spontaneous spine compression fracture. She is now under the care of an endocrinologist who has knowledge of osteoporosis. Was your concern that a drug that inhibits estrogen may also cause a loss of bone density?
Perhaps an endocrinologist would be a good resource for you.

Yep, I dontbwant to take aromatase inhibitors because of the associated speedier loss of bone density and frequently elevated cholesterol. (Which I already have despite blood diet and I cannot take statins.)

I go to Cleveland Clinic so have good physician team behind me. And asked about immunotherapy but didn't pursue it as I got the impression from reading studies and protocols that it's primarily for very high risk situations. I thought that it could be something easy like a pill compounded just for me but it's very sophisticated and involves a lot of science and tweaking of the right mix from what I can understand. The side effects of an aromatase inhibitor are less of a concern than creating the right cocktail. Oh, and the immunotherapy that to suppress cancer may leave one immune-supressed in general for a bit. I wouldn't bet serious money on my understanding of it but 'twas what I think that I understood :‐)

The genetic testing was very reassuring. Its not a promise that my risk of recurrence is only 5% but I talked with a lot of people at Oncotype, including a senior scientist when I had more questions, and feel pretty comfortable. In a sense taking an aromatase inhibitor might (I stress might) reduce the recurrence risk by 40%. But the actual percentage point reduction from 5% to 3% is only 2 percentage points.

Currently 100% of the tortoiseshell cars in this house are on the terrace chattering at a bluejay and pretending to be scary. Since there is only one cat in this household, and a bit of a bluffer whom no bluejay takes seriously anyway, that 100% means nothing to the bird. 😏