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Question about communication with lyme doctor

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Posted 10/25/2016 2:01 AM (GMT 0)
I sent this message to my lyme doctor last week, whom i have an appt with on Thurs. Basically what I had put here seemed to be the same symptoms that others on here described so I wanted to see what you guys all thought, any help or advice is appreciated as I am getting frustrated :(

My email:

Glad I see you next week so I can talk about all of this, but I have been unable to find any good online sources to read for LYME and Bartonella to get an idea about symptoms etc. They really do come and go during the day. I tend to wake up middle of the night and cannot relax or get back to sleep, I have periods of pure exhaustion where just walking up stairs is hard. Today I do not have a headache but my shoulders, middle back, neck hurt, and my eyes hurt like when i move them back and forth also. I have no energy and the fronts of my legs are so sore almost like i worked out but I didnt.. is this normal? :(


Her response:

t's not normal.

It will be good to discuss.
Posted 10/25/2016 2:04 AM (GMT 0)
These are normal bartonella and Lyme symptoms. Buhner book explains each.
Posted 10/25/2016 2:38 AM (GMT 0)
Those are symptoms of Lyme and co's. I don't know why your Dr. is saying they're not.

Also, there are plenty of symptom lists for you to look at online - in fact there is one in the "New to Lyme..." thread.
Posted 10/25/2016 3:05 AM (GMT 0)
Oh my gosh your symptoms sounded just like mine when I first got lyme.

Here is a symptom list you can take to your doc and see what he says about your check marks.

lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf
Posted 10/25/2016 10:16 AM (GMT 0)
yeah I have no idea.. only thing i can think of is that she took the "normal" as in normal non-sick person which duh def not. She is thinking and keeps thinking that mold is a factor BUT i had this issue years ago with just mold at my old job and it is not the same. my place i live i make sure to rent from a place that is not older, i keep it clean like you would not believe haha, and my work there are no signs of mold or dampness or anything in it.
frustrating....
Posted 10/25/2016 11:26 AM (GMT 0)
I agree, I think the docs comment on "not normal" was meant for if you were a healthy person.

Your sx were very similar to mine when I began treatment for Lyme, Bart and Babs. It's par for the course, and climbing stairs is still on of my major problems.
Posted 10/25/2016 5:46 PM (GMT 0)
I just wanted to chime in about those symptoms all being very typical of a Lyme/Bart infected person.

Because of your sleep issues, you may want to have your adrenals checked with a 4 point saliva collection test to make sure your adrenals are putting out the right amount of cortisol and aren't so high (or low) that that's the reason for your waking and not being able to get back to sleep.
Posted 10/25/2016 6:01 PM (GMT 0)
When I read what the Dr. wrote, I thought she was referring to T cells.
T cells are not normal.

Doesn't that make more sense?
Posted 10/25/2016 6:07 PM (GMT 0)
But the question asked was nothing to do with T cells. I think it's a typo?
Posted 10/25/2016 6:30 PM (GMT 0)
Sorry I forgot the I! IT IS it's haha
Sarah
Posted 10/25/2016 6:40 PM (GMT 0)
Ah, that clarifies! Thanks!

Frustrating when Drs. don't answer in complete sentences. I would hope that she(?) means symptoms not normal for an otherwise healthy person, rather than not normal for a person with Lyme.

That would just scream lack of experience with Lyme patients.

I would definitely go through and read our Introduction to Lyme and pay particular attention to the symptoms lists.
Posted 10/25/2016 7:46 PM (GMT 0)
Oh I have and I know several others with Lyme that went to her. I am thinking that she just doesnt have enough time to read everything I send each and every time. I have asked her a lot of questions haha. And I know she has a LOT of patients.
Posted 10/25/2016 10:36 PM (GMT 0)
I think if you step back and read it from a non-Lyme perspective the question says are these normal things to be feeling, not are these normal for someone with Lyme & coinfections. She's telling you it's a good thing you will be seeing her!

Sounds a lot like tickborne illness to me too.
Posted 10/25/2016 10:41 PM (GMT 0)
your lyme doc sucks already (sorry, I'm bias). Yes it's normal. The sore legs, like your hamstring, and your shins is hallmark Bart. And then of course fatigue and headaches and insomnia are like the most common lyme symptoms ever.

I swear if we on this forum were all LLMDs and got paid $200-$400 an hour we would at least be much more helpful. smh
Posted 10/27/2016 11:57 AM (GMT 0)
Ok so here is a sort of answer when I tried to ask her what she meant by "not normal"

My response: Oh I was more so asking if it was "normal" for me to feel these symptoms as a lyme/bartonella patient. I think I phrased it wrong..

Her response: To the extent that having infections is normal, yes, yours is a common picture of someone whose immune system is not keeping up with an infection. I want you to return so we can go over everything and keep you on track to feel better.

Apparently she doesnt realize i have an appt today haha. Is the immune system issue typical of lyme/bart patients?
Posted 10/27/2016 12:05 PM (GMT 0)
Lyme suppresses the immune function, that's how it can survive and do so much damage. Some people have severely compromised immune function, and they really struggle to heal. Others aren't affected quite as severely and heal well, but may take a while. There is a small handful if people that have relatively little impact on their immune function, and they usually heal quickly (for these infections).
Posted 10/27/2016 12:17 PM (GMT 0)
Well my immune system sucks.. to say the least haha I might eat well etc, but I had mono two years ago and since then have never been the same, that certainly weakened it a lot!
Posted 10/27/2016 12:53 PM (GMT 0)
Just so you know, according to Shoemaker, you can still be sick from an old mold exposure. Unless you were treated for it (cholestyramine or some type of similar binder). That is assuming that you have the "mold gene" which doesn't allow you to get rid of the mold biotoxins. This is approximately 25% of population. So I wouldn't totally discount this but treat in conjunction with lyme.

Also, many times you can't visibly see mold (leak behind walls, etc). New homes are actually having major issues with mold because of how airtight new buildings are. It can also grow in AC/heat ducts.
Posted 10/27/2016 1:49 PM (GMT 0)
Oh great because that is what I went to this doctor for about 4 years agoish.. I was getting weird flu like symptoms, coughing, sore throat, aches, just general blah and it would be like worse as the week went on and get a little better on weekends. My work was never dusted, the tiles leaked when it rained and you could see the mold growing, mold on the insulation, yeah... I did get tested back then and Nope I am not able to get rid of biotoxins... sigh. She had me on Chloestryamine and some hard core antibiotics eventually I just stopped the chloestryamine because I could not take it anymore and I felt better. When I changed jobs over 3 years ago and moved into a new place well 7 year old townhome i was still feeling fine, but when I would come in on weekends to work at the animal hospital I started coughing and feeling sick. They did get me an air purifier that we turned on up front to help me and I think when I started the meds it did actually.
Posted 10/27/2016 3:04 PM (GMT 0)

saozemko said...
Oh great because that is what I went to this doctor for about 4 years agoish.. I was getting weird flu like symptoms, coughing, sore throat, aches, just general blah and it would be like worse as the week went on and get a little better on weekends. My work was never dusted, the tiles leaked when it rained and you could see the mold growing, mold on the insulation, yeah... I did get tested back then and Nope I am not able to get rid of biotoxins... sigh. She had me on Chloestryamine and some hard core antibiotics eventually I just stopped the chloestryamine because I could not take it anymore and I felt better. When I changed jobs over 3 years ago and moved into a new place well 7 year old townhome i was still feeling fine, but when I would come in on weekends to work at the animal hospital I started coughing and feeling sick. They did get me an air purifier that we turned on up front to help me and I think when I started the meds it did actually.

My limited understanding of mold biotoxins is antibiotics likely make the mold issues worse by killing off good bacteria that try to keep the fungi in check. Do you know why they gave you Abx?

This is why treating for both Lyme and mold at the same time is a tricky ordeal.

Post Edited (Navigator) : 10/27/2016 9:07:30 AM (GMT-6)

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