Feeling Dismissed and Upset after Dr Appointment

I am so upset. I went for a follow-up with the ID yesterday. A month ago I changed my appointment from the NP, who mentioned doing a picc line to the actual Dr. who I assumed would maybe try antibiotics again, a combo of meds, whatever. As I'm walking down the hall to get my weight, etc. done and I hear someone call her by name and say hello. She then said shhh. So I go to the room and the nurse tells me that the Dr. (specifically the one I was there to see) would be in shortly. Eventually, a Dr. comes in and it's a different one. I mentioned that I was supposed to see the other Dr. and she just commented that she couldn't. This is a Dr. who apparently has been there 2 months and has been practicing for a whole 5 years. Not that 50 years would have made her any more intelligent than what she is now!

So, anyway I began telling her the symptoms I'm having. Blood sugar issues, pressure behind my eyes, some fatigue, some calf pain, that feeling of not being able to speak sometimes, trouble finding words sometimes, occasional memory problems. She tells me that none of that sounds like Lyme (she wants to send me to a Neurologist) and that my test was borderline and she questions whether I even had Lyme. I had 23 and 41 igm positive (WB) and 41 igg positive. She then says that Lyme in Georgia (US) is rare. She asked if I had seen the bulls eye rash and I said no. The look she had made me think that that would have been the only real way to have Lyme, in her mind at least I guess that's the only definitive proof. I then told her that it had been below the bikini line and if there had of been one I never would have seen it. I didn't even think twice about it after I was bitten. She's also not surprised that the 2nd time I took Doxy for 10 days helped because it has anti-inflammatories in it and then also it could be a placebo affect.

She then started saying that she would recheck for Lyme and that if I had had Lyme that it will definitely show up as igg after this length of time (bitten late July, early August). She also said she's checking for Babesia, which my internist labs say negative but I didn't tell her that and for anaplasma which hasn't been checked unless that's the same as Ehrlichiosis which also was negative.

I then asked about checking for Bartonella. She proceeds to tell me that that's not a Lyme co-infection. That's cat scratch and doesn't come from ticks. I'm just going to leave that right there and say nothing more.

I kept it together and didn't cry until I got home.

I've read a lot of people's stories of their symptoms and problems they're having and I do feel very fortunate that my symptoms seem minor compared to other's. But these are my symptoms and I feel dismissed and not validated because I don't have some of the more obvious symptoms.

Thinking back, I was bitten early August (again) 2015 and I remember having a time that I wasn't feeling well shortly afterwards, weird sort of feelings too. I remember taking antibiotics some time shortly afterwards for some reason and I was checked for Lyme late that month or sometime in September. It came back negative but maybe that test was done too soon and maybe my immune system took care of it at the time. This time I had a tooth infection from May to July before finally getting it pulled. (Dentist didn't listen) Since may I've had 4 z-packs and Clindamycin in July into August. My immune system is probably shot.

So now, I'm just lost. I know my husband loves me but he's not a worrier and never has any problems. Unless I can say specifically where I'm having pain he doesn't understand when I say I just don't feel good. I often get comments from him saying that I must feel good today because of the way I'm acting. Well I can't share the spacey feeling after I eat with him or the eye pressure or the calf pain. I'm tired of having to explain myself a thousand times.

He wanted me to wait until I saw the Dr. yesterday before deciding what to do next. After having a mother who went to a gynecologist because she wasn't feeling well and bloated and being told that there was nothing wrong with her as far as female problems and her being diagnosed 2 months later with Stage IV ovarian cancer...I have zero faith in Dr's.

I'm sorry. This just isn't a good day emotionally.

Thank you PeteZa. Tears flowing again over here. I guess because having someone understand makes all the difference. I tell my husband that you can't listen to what doctors say. It's the people, like people in this forum, who share their experiences. That's where the truth is found. I've tried telling him and sometimes he looks like he might get it but other times it's like I was wasting my breath.

My Lyme test was done through Quest actually. It was done early October so I guess it was done at just the right time because otherwise, I would have had all of these symptoms and never connected it to the tick bite.

I had already told my husband that I wanted to do the herbal thing. I just don't know where to start. I know I can do the Cowden Protocol. I have several Stephen Buhner books. Again, I'm lost. Did you do a specific treatment and if not how did you even begin to start treating yourself?

Many of us here have had that experience - I have over and over for 40 years (literally), as it took me that long to get a 'real' diagnosis.

As PeteZa said, you have every right to feel upset! I can't even keep my mouth shut when ignorant doctors start spouting this stuff. When my hubby was infected, I was armed with a ton of paperwork - all scientific studies that had been done to prove the unreliable testing, the backwards IDSA treatments and more. Fortunately his doctor listened to me, because after having lived with these infections for so long - I had zero doubt he had Lyme. His infection was treated quickly and effectively, and I'm sure it's because I pushed his doc into it.

But, this is why we suggest using Lyme literate doctors. It's simply hard enough to feel this way, then to be dismissed over and over again, all the while we know we have an active infection - it's way beyond rude. Doctors never learn much about Lyme in medical school, and most think they know all there is to know - which is a far cry from reality.

Hang in there and know that this doctor simply didn't have a clue. ID doc's rarely do.

And a word about PICC lines for medications - unless you need to avoid putting meds through the intestines due to massive serious issues with absorption or rescue drugs, a PICC line isn't necessary for treating these infections. If the abx will work, they will work when taken orally. IV's and PICC lines don't have any more success than oral abx. The IV's and PICC's are more for the doctors convenience than for any medical necessity.

I hope you can shake this horrible feeling, and realize that it was the doctor that was wrong - both in diagnosing you and in the way you were treated.

Sapphire, I am so sorry.

I can't tell you how much we hate seeing more people continually coming into the forum being treated the same way so many of us, as well as most everyone on the planet with this Lyme epidemic. We have a member with the user name "dismissed". It's an all to familiar feeling.

When I realized that I had Lyme diagnosed as Fibro for more than 3 decades, and after my Internist seeing for himself that I was testing pos. on two tests for Rocky Mountain Spotted Fever and yet he STILL wanted to send me to an Infectious Disease doc in the city, I planted my feet and said "no."

No more being "dismissed". No more not being validated and treated for what's really wrong with me, in the manner that is required. Particularly since I went untreated for so dang long.

I understand Cowden's protocol is a bit more aggressive than Buhner's, who I'm sort of following. I say sort of because I've been ordering things that target specific problems that I have, but they are all a part of remodulating my immune system to help it fight.

You begin by double checking all recommendations on the protocol against in contraindications that might be issues for you.

For instance, (and this isn't necessarily Cowden), Alka Seltzer Gold is highly recommeded as an excellent detox. I found out while checking that I had better not take it, because I take medication for High Blood Pressure and Congestive Heart Failure.

That's the sort of thing you want to watch out for. When everything on the protocol checks out ok, then you start ordering.

I'm not familiar with Cowden, but Buhner's protocol gives me leeway which form of herb I take. So I check prices with the more popular suppliers, and begin ordering.

Because you don't want to start taking everything at once on your first day, it is probably alright to limit your orders to a few at a time. That's a money saver. Also, and this depends on your finances, if you want to limit the size of each item, it's ok to order the smallest to make sure you're going to be able to tolerate it. Plus, you may decide to start with a smaller than suggested dosage and build up more as you go, or you may need to cut back if you herx (feel even worse after taking it because of die off toxicity).
Different schools of thought on that here. Kind of depends if you're normally sensitive to new things.

julymorning said...

Because you don't want to start taking everything at once on your first day, it is probably alright to limit your orders to a few at a time. That's a money saver. Also, and this depends on your finances, if you want to limit the size of each item, it's ok to order the smallest to make sure you're going to be able to tolerate it. Plus, you may decide to start with a smaller than suggested dosage and build up more as you go, or you may need to cut back if you herx (feel even worse after taking it because of die off toxicity).
Different schools of thought on that here. Kind of depends if you're normally sensitive to new things.

Excellent advice here. Buy the small bottles first so you can try out the herb. There were a couple of herbs that made me sicker. Not a herx, not a flare, just made me sick to my stomach. I left them out and decided to come back to them at a later date..... I never had to. Glad I did not buy a 4 ounce bottle.

seems the advances in medicine have an opposite side where many doctors are cranked out of these medical schools that turn everyone into a lemming heck i can learn almost as much as these docs from researching the internet.

try not to be too upset with the doctors or even your husband no one and i mean no one understands this disease unless you have/had it. that's because there aren't many things out there that can literally give you symptoms every waking moment of your life. it just doesn't make sense to most people cause when you get sick you take an antibiotic you kill it and life moves on. or you get a virus it runs its course and its over.

we have very little understanding of these pathogens and how they affect the human body. i truly believe in 15-20 years lyme disease is going to be in 80-85% of the country and the infection rates are going to skyrocket. this disease will get the spotlight it deserves but we're not there yet. i know doesn't help all us sufferers now.

find yourself an LLMD and get treated properly. if your husband doesn't understand tough s*it it's your health and your life and he needs to take it seriously if even only because you are.

I find it difficult now talking to my husband about it...if I tell him too much then I feel like I'm complaining...if I don't tell him enough...then he wonders why I'm not 'doing anything'

Can't win.

the story gets old after a couple of years.


I only give him information now...if he asks me how I am...

Thank you so much to everyone who took the time to read my post and respond. It really means a lot.

I'm sorry I didn't respond back yesterday but I just felt wiped out, some physically, but almost completely mentally and emotionally. I just feel kind of numb all over and having a throw my hands in the air kind of moment.

I did have my hopes up going into the ID Monday. My internist had told me that she actually has patients herself that are being treated aggressively in that particular ID office so I was expecting the same I guess. I know of someone who I went to high school with, grades above me so I just know who he is not a friend, but he and his wife both have Lyme. He has infusions there at the office so I'm assuming his case is classic. I don't know.

I talked to my husband about everything again last night. I feel like I'm having to plead my case about why I want to do this and why I want to do that. It's not that he's not agreeable but it's like he wants concrete facts I guess. He can't seriously think highly about doctors either.

Our daughter, after having her 3rd Gardasil shot in April 2015 (against my advice, but she was 19 and wouldn't listen) started having bad hip pain, leg and arm numbness late June. Progressed to horrible pains in her back, neck, etc. Headaches. Dr. did lots of blood tests and it came back showing Ehrlichiosis igg. She was put into the hospital and given 9 bags of Doxy. Couldn't walk when she was released because of weakness. The ID doctor, different than mine, that was called in ended up saying that basically she shouldn't have been put into the hospital for that because it was an old virus and wasn't what was causing the problem. We took her to 6 different doctors and as a last resort took her to the Mayo Clinic in FL because it was supposed to be one of the best. All we received out of that was multiple wasted 6 hour trips, hotel bills, a $2000 hospital bill to pay and a Fibromyalgia diagnosis.

In every appointment I talked about the Gardasil, never was taken into account but I knew it wouldn't be. YouTube videos of girls talking about their experiences and symptoms would be identical to her. I did happen to run across an article about a girl who had had the same reaction. Doctors, of course, denied the shot connection. She was taken to a LLMD and they said that the Gardasil had activated a dormant Lyme she had in her body. I don't think that every girl whose had problems with that shot has Lyme, but since my daughter did show Ehrlichiosis in her blood, who knows, maybe that's the key to her situation.

Anyway, I will be trying to do this on my own. So I do have a few questions. I had thought Cowden Protocol because it's structured and I figured that since I don't really know what I'm doing that it would be the easiest or I'll do Stephen Buhner since he seems really intelligent and wants to help people. So my questions are:

1. Is one more effective than the other? I know though that each person responds differently so there may not be a cut and dry answer on that.

2. Are there any so called herbal antibiotics or is it all just about building up your immune system to fight it off yourself? That's a question that my husband was actually asking when I mentioned the Cowden Protocol but I thought I read somewhere that there wasn't, at least not in his program.

3. If I do Stephen Buhner's Protocol, I do have a few of the books, I know there's a core protocol and then you add according to your particular symptoms but looking in the book I didn't even see any of my problems listed. What do I take for the spacey feeling I have after eating or blood sugar issues and what do I take for just not feeling well?

I was wondering today if my "just not feeling well" has to do with the fact that my EBV test came back high so could that be why I feel the way I do. What do I take for that?

I'm sorry that I never have anything to add to help with any questions and I'm also sorry for bombarding y'all with all of these questions but know that I really, really take to heart all of your opinions and advice. Everyone's experiences and advice is invaluable to me. So Thank You All!

I'll admit that my diet is horrible and that will be the thing that, out of everything, I expect to be the hardest. I can tell that I have that spacey weird feeling after eating sugar or breads but the odd thing is that it doesn't happen all the time. When it does, it's almost immediate. There's literally hardly any digestion time at all. It can be 5 minutes or less. I have a glucose meter that I've been using to check. I can feel that way whether it's around 110 or in the 80's. But then again, it comes and goes. All of November I had those issues. Not much in December, with no diet change and now it's back.

I do a combo of antibiotics and Cowden herbs as directed by my LLND. Diet rally is one of the most important first steps. I think most of us on here have had to switch to a low crab, low sugar, gluten free diet. It's tough at first but it gets easier. My diet was impacting my adrenals which can cause those fluctuations in energy and even brain fog.

Well I've had multiple endoscopies but never had any biopsies done specifically for Celiac. I did have bloodwork done in October for all food allergies before I found out about the Lyme and everything came back showing that I wasn't allergic to anything. I know I could have sensitivities to gluten though.