HealingWell
Search Close Search
☰

New and overwhelmed..

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/7/2018 1:17 PM (GMT -5)
First, thanks for reading. I am one who get easily overwhelmed and then shuts down.

I have not been tested for Lyme, but I want to ask my dr. to do this testing. She listens and often will do bloodwork that I ask for, but she needs definite reasons to do it.

I have been bit my many ticks.. never have I seen the bullseye or suspected Lyme (becaue I've never seen a bullseye rash) But, I haven't felt well for 2 years now. Been to many doctors.. I've been told it's depression and anxity.. which I would agree with, but I feel depressed because I don't feel well.. I know something is off and it's frusterating to not know what it is so the blanket "depression" isn't sitting well with me.


I was diagnosed with ADHD 2 years ago due to many of the symptoms I have.. massive brain fog, no focus at all, starting lots of things and finishing very few, easily overwhelmed and shut down.


I am on Adderall and it helps some.. now the last year I have felt worsening symptoms. I went back to the dr. and was sent to phychiatrist.. she says I'm depressed and gives me meds (that don't go well with Adderall so I didn't take them).. feel like I was back to square 1.

the last month it's been even worse.. headaches, neck is stiff (this has acutally been an off and on thing I always blamed on exercise... ) I just want to sleep, but then at night I have trouble sleeping.

I have low iron and have for a while..
I've had bloodwork where levels are off.. MCH high, MCV high.. then lympohcytes low.. Ferritin low.. iron low.. Vit D hovers at 30 even though I am in the sun a lot.. I love being outside! I think I eat pretty well.. veggies, fruits, protein.. etc.. I drink water only and 1 cup of coffee in the mornings.. so overall diet is reasonablly good.

My liver enzymes were off and she wanted me to have an ultrasound of my liver.. and ultrasound was okay.. but those liver levles have been higher several times. Urea Nitrogen has beeen high. Just thingsl ike this that lead me to believe something is going on.. she says they aren't off enough adn sometimes it's dehdration.. etc..

Last thing is I have had 4 infections in the last 2 years and now "allergies".. I asked several times if it could be Adderall realated.. somehow the medicine causing more infections.. she said no. I have only had 2 UTIs in my life (I'm 39) before the recent 4 times in 2 years. I also had Bacterial Vaginosis for the first time ever during this time and what I thought was a sinus infection (never had those either) that they finally decided was allergies since the antibiotic didn't clear it up.

Does any of this sound like it could be lyme related? I am moody, angry, low energy, headhaces, infections, neck pain, and often ringing in my ears too.. forgot that one.

I feel like I'm crazy! I just want answers and I want to get in to see my dr.,but I need to say the right things so she will order the test. I feel like I'm so frustetated I am going to go in there and just start crying and saying all this and she's going to not take it seriosuly and chaulk it up to depression or whatever...

Sorry it's long and rambling.. I'm just tired of feeling bad.
Posted 8/7/2018 1:22 PM (GMT -5)
Also, I was so frustrated last summer I did the 23and me genetic testing to learn if I anything that could be contributing to how I was feeling and learned a great deal there. I do have a CBS mutation and several others dealing with detoxing that I think could be making things worse. I tried bringing that up to my doctor and she wasn't really buying into any of that.. so it makes me cautions and wanting to approach this in the right way to get the testing done.
Posted 8/7/2018 1:46 PM (GMT -5)
I'd start with the test, if it's negative you can go to a LLMD (Lyme literate) who will treat you according to symptoms.
Posted 8/7/2018 1:55 PM (GMT -5)
I know it's hard, but try not to get overwhelmed. Know that you are wise for looking into lyme and all that you are doing. You sound to have a good head on your shoulders and have already have looked into certain areas many people wait years to look into after doagnosis.

Take a deep breath and take things one step at a time. You have found a great place with compassionate and knowledgeable people who are suffering as well. When you have time read through the new to lyme thread at the top. It is full of helpful info that will ease your mind on next steps.

For now, you can start a new thread with "Looking for LLMD in (your location), and we can help you get started in finding a doctor specializing in lyme and it's various co-infections.

Also, while you are waiting, check your home/workplace for mold or any other environmental toxins that may be contributing to your feeling ill.

You are in good company here and have chosen a great place to look for help. You've got this.
Posted 8/7/2018 2:10 PM (GMT -5)
I'm concerned my doctor won't find a reason to do the test without having a tick very recently or with the bullseye rash. I guess I was looking for experiences with getting your doctor to actually do the test. I've looked at outside labs and it's very expensive for the testing. I don't know that many doctors know much about this.


The closest LLMD is about 2 hours from me. I believe I need a referral to go to one. I would first need the testing correct?
Posted 8/7/2018 2:45 PM (GMT -5)
I believe that you could just make an appt with a LLMD and go from there..like some others said it is good that you are looking into this...I know when I was at my worst a few years back that lyme never even entered my mind...but I was lucky that a ER Dr gave me a lyme test and very lucky that it came out positive..I was also in the right place at the right time a few weeks later upon finding out about LLMD..because in my situation the standard protocol would have never helped me.
Posted 8/7/2018 2:50 PM (GMT -5)

Trishtris said...
I'm concerned my doctor won't find a reason to do the test without having a tick very recently or with the bullseye rash. I guess I was looking for experiences with getting your doctor to actually do the test. I've looked at outside labs and it's very expensive for the testing. I don't know that many doctors know much about this.


The closest LLMD is about 2 hours from me. I believe I need a referral to go to one. I would first need the testing correct?

No, you don't need a referral for an LLMD. However, if your dr refuses you a lyme test, and preferably a western blot, I'd find someone else. The most well respected lyme testing lab in the US is Igenex in CA. You can actually order a test from their site and go to labcorp and have them draw your blood. When you get your results, you could post them here and we can help you decipher them.
Posted 8/7/2018 3:32 PM (GMT -5)

Hoagie said...

Trishtris said...
I'm concerned my doctor won't find a reason to do the test without having a tick very recently or with the bullseye rash. I guess I was looking for experiences with getting your doctor to actually do the test. I've looked at outside labs and it's very expensive for the testing. I don't know that many doctors know much about this.


The closest LLMD is about 2 hours from me. I believe I need a referral to go to one. I would first need the testing correct?

No, you don't need a referral for an LLMD. However, if your dr refuses you a lyme test, and preferably a western blot, I'd find someone else. The most well respected lyme testing lab in the US is Igenex in CA. You can actually order a test from their site and go to labcorp and have them draw your blood. When you get your results, you could post them here and we can help you decipher them.

I still think you need "a doctor" to sign the order. It can be any doctor. If you have a friend of a friend who is a chiropractor that will work. Know a dentist...that will work. With the user name of Trish I assume you are female will your ob/gyn sign the form?

The test looks for antibodies and lyme supresses our immune system. It might be wise to prompt your immune system by taking a few drops twice a day of olive leaf extract for about two weeks before testing. You can find that at a health food store or order online.
Posted 8/7/2018 3:54 PM (GMT -5)

jrpsf said...

Hoagie said...

Trishtris said...
I'm concerned my doctor won't find a reason to do the test without having a tick very recently or with the bullseye rash. I guess I was looking for experiences with getting your doctor to actually do the test. I've looked at outside labs and it's very expensive for the testing. I don't know that many doctors know much about this.


The closest LLMD is about 2 hours from me. I believe I need a referral to go to one. I would first need the testing correct?

No, you don't need a referral for an LLMD. However, if your dr refuses you a lyme test, and preferably a western blot, I'd find someone else. The most well respected lyme testing lab in the US is Igenex in CA. You can actually order a test from their site and go to labcorp and have them draw your blood. When you get your results, you could post them here and we can help you decipher them.

I still think you need "a doctor" to sign the order. It can be any doctor. If you have a friend of a friend who is a chiropractor that will work. Know a dentist...that will work. With the user name of Trish I assume you are female will your ob/gyn sign the form?

The test looks for antibodies and lyme supresses our immune system. It might be wise to prompt your immune system by taking a few drops twice a day of olive leaf extract for about two weeks before testing. You can find that at a health food store or order online.

To sign th order for the blood draw, right? But you don't need a referral to see an LLMD.
Posted 8/7/2018 3:55 PM (GMT -5)
Bulls-eye rash is NOT present 80% of the time or whatever crap the IDSA has published. Most of the publish science I have read shows that only about 30-60% of culture confirmed Lyme cases presented with a bulls-eye.

I did not have a bulls-eye rash. Many of us here did not have a bulls-eye. I have read a couple theories: bulls-eye only happens upon second, third or subsequent exposure, but not first; only certain strains of Borrelia cause the bulls-eye, or bulls-eye might indicate that one is exposed to a new strain after they were already carrying another Borrelia. This needs to be studied more.

You might have trouble getting your GP to run Western Blot testing especially if you ask them to use a lab they may not be familiar with. Mine begrudgingly ran a Labcorp. When the results came back, they made it difficult for me to get the results. They only wanted to say "it was negative". It actually had 2 bands positive and a later igenex had both of those bands plus 2 more.

Anyways- I would not be surprised if your GP does not investigate or consider a late stage tick borne infection. They are trained not to, and penalized by insurance if they do.

I think maybe your best plan is to take all you can get from the GP that is covered by insurance, make an appt. with an LLMD, and ask lots of questions here.

In my opinion: tick bites + your symptoms = high suspicion of tick borne infection
Posted 8/7/2018 5:05 PM (GMT -5)
When I went and saw Dr J in DC, they were of the idea that the bulls eye rash is an indication of prior exposure.

I just recently watched a talk given by Ellie Lobel where she states that the rash is an indication of which strain you are infected with. The bulls eye rash is present in a few strains,
the classic Borrelia burgdorferi being one of them. It is also one of the most virulent strains.
✚ New Topic ✚ Reply