My husband, the pcp.......

Hi Utahgal,
I'm so very sorry that you feel like you/your husband are being attacked. I'm sure that is not the intention of some of the members here - they are frustrated and need to vent, but I'm sure they too realize that the 'powers that be' are in charge of the doctors and that it's not the docs that make most of the 'business' decisions.

I get mad and highly frustrated with those docs that don't care. They will tell me that I have no clue what I'm talking about, or are very condescending because they don't know what I'm talking about, even though they should - like when we went to see the Cardio about my husbands heart function and the permanent filter that he placed in the vein in my husband's abdomen - and he had no real idea what the answers were, but it took 25 minutes to get him to finally admit to it! Just tell me you don't know!!!

The only part that frustrates me is - in my area - the lack of any desire to have a Lyme patient in their office. I was actually turned away from every doctors office in my area. They turn away patients that have bulls eye rashes all the time so that they don't have to have a Lyme patient. That's wrong in my opinion - but I do recognize that not all doctors are like that.

Before I was trying to find a doctor that would take me because I had Lyme, I walked into a doctors office holding my hand over the area of what I now know is my spleen because I was having quite a bit of pain there and when I asked what organs were there, I was told, "organs" - so I walked out. I mean if they didn't know or weren't going to answer my questions honestly, what good would they do me?

Please try not to be offended by what gets said on here about doctors - most of us understand that for the most part, they are just humans doing the best they can do in most situations. It's just very frustrating though when we are treated with disrespect simply because we have an infection they would rather not have to address.

I think the biggest problem with the "healthcare" system is not doctors but, instead, Big Pharma.

They are the ones that fund most research and, of course, the research facilitates their goal - more money.

There's a LOT more money to be made treating the diseases and conditions caused by stuff like improperly treated hypothyroidism and Lyme than treating those issues appropriately.

Big Pharma also funds many of the "health" organizations (such as the AACE, ATA, etc.) so, of course, they will promote guidelines that keep people sick.

I would imagine that many doctors get tired of the nonsense. Surely, they became doctors in the hopes of helping people. Big Pharma (and insurance companies) make it very difficult for doctors to do their jobs. It's a very sad state of affairs.

Lyme disease.......

Before I became sick with Lyme, my husband diagnosed and treated as outlined by the IDSA. He used the Western Blot as he felt ELISA was a waste of time. He treated 3-4 weeks with doxy.

He did not believe in IGenex. He felt that no patient would be willing to shell out the cash for that lab when their insurance would cover the typical western blot. He thought IGenex was a scam. He didn't want people to waste their money!

When my thyroid doctor didn't see enough improvement in me after optimizing my hormone levels, they suspected Lyme. Lyme can interfere with thyroid hormone on an intracellular level. You may have optimal levels of thyroid hormone, but the Lyme bacteria can prevent your cells from utilizing the hormone, essentially rendering you hypothyroid. Once you knock down the Lyme load, things should work again! ......according to my thyroid doctor.

So, I took the IGenex test and it definitely showed positive bands. Especially band 31, which suggests Lyme.

I told my husband that I would have been more than happy to shell out the $200 years ago, but no one offered it to me! It would have saved me years of suffering! I insisted that he order a bunch of IGenex kits to have on hand at his office. He agreed.

So, he has suspected Lyme in several patients since then. Mostly because he's LOOKING for it more now after what happened to me. about half the patients he offers the test to, want to take it. The other half is happy with their "negative" standard test and decline the IGenex because they don't want to spend the money. He has also referred these patients to the ILads website. He mentions that I see a particular LLMD, but encourages patients to search for their own LLMD. He tells them up front that he is not an expert in Lyme and doesn't feel qualified to treat it appropriately.

The woman traveling from Boston to see him for thyroid, turns out she had Lyme. He diagnosed it with the IGenex. So, seeing is believing.

My husband had attended a CME conference in Boston this past October (1 month after I was diagnosed with Lyme). It was run by the IDSA. Lol. I believe it was a 2 day conference (maybe it was 3 days?). They spoke about Lyme for 40 minutes. Absolutely nothing was new in the presentation. "Treat with doxy for 3 weeks. If symptoms persist, refer patient to Psychiatry." Seriously? That's the latest and greatest in Lyme education? No wonder why we are all still sick! No wonder why nobody helps us! Look at what they are being taught!

I have seen his notes first hand! I have read the medical journals that come home. There may be gains being made in Lyme research or treatment, but it's not being taught at the CME's or written about in the journals. And that's where most docs go to get current info.

I'm not sure where my husband stands with Lyme. I've been in treatment for 5 months now with no improvement. Every once in awhile the little ISDA devil that's sitting on his shoulder will make a comment like, "gee....you've had an awful lot of abx." Or, "hmmm....you're still not better after all this time, maybe it's not Lyme."

I just don't think he can help himself. That's how he's been brainwashed. I really need to see some gains to prove that it's Lyme.

Thanks for all the info on thyroid issues Utahgal! Before I suspected Lyme, I suspected thyroid problems. So, it's very helpful!!!

I'm extremely happy that your husband is helping people. That's wonderful!

Thanks again for sharing. :)

Hi Utahgirl,

Thanks so much for taking the time to explain treating lyme disease and hypothyroidism from the perspective of the primary care physician. So often we hear our side, and it is a side of being shut down and going from doctor to doctor, but we really don't hear it from the side of a doctor who has hundreds of thousands in medical school bills, who needs to provide for their family too and who unfortunately is being taught to refer patients to psychiatry who don't get better on a standard course of doxycycline.

That last part, that they are taught to refer to psychiatry is SO (so, so, so, so, so....) enlightening to me as to why SOOOO many patients feel disrespected by their primary care physician - but it also makes me understand where the pcp is coming from as well.

Anyways, thanks for taking the time to share from your perspective!

Lastly, I want to share about a pediatrician in our area, who is on the board for the major children's hospital here, who has gone 'rogue' so to speak (not really) and after many years started her own integrative practice at the beginning of Dec 2014. To make ends meet - she said she was only accepting 200 families and each month the families will pay $150 to have unlimited access to her (morning, noon, and night). Apparently it is called 'concierge' medicine. Well, I thought and thought about it...and waited a month or so to pull the trigger...and come to find out...her practice filled up within 1 and 1/2 months of opening up as a concierge service. She actually has had lyme disease and has family members that have it and I believe that is what pushed her in that direction. She offers nutritional iv's, neurofeedback and a bunch of alternative med stuff and she is considered one of the very best pediatric doctors in our area. Just goes to show that people are willing to pay for GOOD care. All I can say is I was shocked (!!!) that her practice was full that fast...especially with people having to pay $150 just to have access to her (appt's are on top of that and can be billed to insurance).

Utah - thanks so much for this thread! Sorry, you've had to listen to 'us' rant about the Doctors on this forum!!!

In Canada things are a bit different. Most of the PCP's (we call them GP's) are doing quite well financially after they've been practicing for several years.
But, I do think it's difficult for them to do their job effectively. When I go in for a regular appointment, my Dr. is allotted 10 minutes. 10 minutes!! How can you even discuss anything in detail in ten minutes, and have a Dr. try to determine what needs to be done??
With the appointments scheduled every 10 minutes (and there's rarely a break, because we have a shortage of Dr.s here) - they don't have time to do their paperwork. They end up staying late at the end of the day, on their own time.

Like Trav said - I wish they would say they didn't know what was wrong....rather than say nothing is wrong, or your need psych meds..etc.
I had at least 4 Doctors tell me I had peri-menopause - it was the cause of all my symptoms. Yah, right, after being healthy all my life...and now having a laundry list of sudden onset symptoms, that was growing by the week?

But, there are good Docs, and sounds like your husband is one of them!!!

Good for him - being open-minded and thinking outside the box.

Utah, it is so great that your husband was able to diagnose someone by Igenex. I wish more doctors were that open minded.

I'm glad there are some doctors who are starting to realize that treating symptoms is superior to treating test results. Good for you, Utahgal, for not giving into his former IDSA mentality and for gradually changing his point of view. You are a strong woman.

At some point, as more and more spouses and children develop chronic illness, doctors will start to come to their senses.

Full disclosure, because I have had a rotten couple of days with my mom being hospitalized for a fall, and now having to stay because of additional swallow studies that may lead to a g-tube, and this thread is really bringing out the feels tonight. I am also a physician, a general pediatrician by training. I trained in the east coast, so I learned a little about lyme, but never to the full extent that the infectious disease doc get taught.

I can tell you firsthand that we are told that chronic lyme does not exist from ID specialists, at least from the ones in my training program. Basically told that we are crazy. I never thought about it from the practitioner perspective because I never experienced a patient with this. But now, it is a whole different experience.

From my experience with my mother, I can say that I am truly humbled by the physician's lack of knowledge of the human body and its maladies and its ability to heal.

I only want to say that because, as least from the PCP perspective, there is lack of information, lack of questioning, because there is no time for the reasons that Utahgal mentioned. We have become slaves to the insurance companies because we lose our livelihoods otherwise. I have the utmosst respect for my LLMD and the other specialists who are trying to help my mom and I before it is too late.

Thanks Utahgal for bringing this up. I am sorry I did not disclose this earlier. I was afraid of being called out as a narc or something.

To be clear, no one is required to disclose what they do for a living here. As a matter of fact, we would rather you don't, as doctors can't give "medical advice" on this forum, as it's against the rules.

I think those doctors and Nurse practitioners that are doing their best with their patients are wonderful - it's the ones that either assume I'm an idiot or that are willfully ignorant that I have trouble dealing with.