A pause

Hi, Sunflower. I'm sorry you have not been getting the support you should. You're absolutely right that everyone's treatment is going to look different, and we need to be supportive of each other.

I remember your post the other day mentioning your concerns about the cost of further testing with your new LLMD, so maybe people questioning the necessity of those tests were trying to be supportive of the financial concern by saying the tests might not be necessary? I think some of us have been burned by a few predatory doctors, and therefore feel like cautioning our fellow members when they are being asked to spend money they say they can't afford is the same thing as being supportive. I'm just guessing here. I don't know what folks might have said in direct emails to you or on other forums, but I'm really sorry it's been disrespectful and uncomfortable. That's the opposite of what these forums are for!

The other day when you mentioned the stool test, I thought about posting that I have found my stool tests really informative and helpful. Ultimately I decided not to post that, though, because I thought it would sound pushy after you expressed concern about the money. I definitely have had LLMDs push very hard even after I told them I could not afford certain treatments, and I didn't want to add fuel to the fire if you were feeling that way. Looks like I interpreted that wrong!

On forums we all like to talk about our experiences, and many (most? all?) of us have our distinct lenses through which we see these illnesses and their treatments. It's a shame when it gets contentious or makes people feel like their choices are being judged. I have seen people get better from treatments that make no sense to me, go against things I've read, bankrupt the patients, and carry great risks. I try to remember this when what works for me is not helpful for someone else, and vice versa. We really are all so different, and there is no one right protocol for tick-borne illness treatment. If there were, then we would not need this forum!

I really value your presence in this community, and I hope that you will stick around. It's great that you like and trust your LLMD, and I hope your path with them yields plenty of progress!

Sunflower1920 said...
Apparently my "protocol" that my new LLMD is doing with me isn't good and getting questioned by some seasoned veteran chronic Lyme, mold exposed, celiac, thyroid warrior "know it alls".

I had hope for a few days after seeing this doc and really thought I'd get my life back and turn the corner it would take time but I'd get more progress. Guess too good to be true. This is why I am not comfortable discussing alot of things anymore and have to set boundaries. I've seen others get almost border lined bullied because a fellow lymie didnt "approve" of someone else's treatment. Not just on here but other Lyme forums.

I must have missed the memo or something I thought we were paying the Llmds the big bucks not other members who we never met that are in front of a computer screen critiquing people's posts raining on others parades. I can't imagine what is discussed via private messages.

Heads up , Lyme /Co's and all the other conditions that come into play are very very complex. This is why most struggle. It is not one size fits all regarding treatment. Every lyme literate physician is different. The moment something is questionable then they aren't legit Lyme docs too?

Are you getting questioned on this forum?
Sorry to hear this - and hope I didn’t say anything to offend you?
Can you point me to the thread/posts where that has happened ?

Regular blood tests are up. Negative for M. Peaumonia and C. Peaumonia both IgM and IgG. Liver slightly elevated and IgA is high. Homocytine and Methyl normal.

i am also sure the people on this forum will have been trying to help.

as lymie24 highlights - we all have to bear in mind that no-one can go through this illness without forming strong beliefs of one sort or another - especially where things that appear to have helped us are concerned - and most people are here to pass on what we can from our experiences to try to help others.

so that's mostly what you will experience if you come and share your experiences or ask for input. everyone means well - but of course if they share anything - as a matter of course their beliefs will in some way be encompassed within what they have to say.

so its best to take what people have to say here in exactly that context - ie just a N=1 experience that they hope you can take something relevant or useful from - but is not an authoritative source.

if you really do feel someone has sought to harm, or bully you please do reach out to the mods with the post in question and i am sure they will take it seriously.