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@windyshores

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.

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Replies to "I gave info on the fact that testing is interpreted differently by different doctors. Number of..."

@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?