Seeking general advice and referrals near Pittsburgh

Hi,

My name is Kevin. I am new to this forum. I will try to keep this concise. I was diagnosed with Lyme disease in the summer of 2019. I was treated initially with one day of doxycycline after discovering a tick embedded in my back. 2 months later I woke up experiencing heart block and went into an ER where I was given IV doxycycline and then 3 weeks oral after being discharged. For a year after my hospital stay I felt mostly fine, but last Fall I experienced a sharp pain in my back, like I pulled something, and subsequently started experiencing constant joint pain all over my body. That pain almost all but subsided a few months ago, but I have had other stretches since where I have experienced symptoms including mild confusion, urinary pressure, chest tightness and insomnia. I have addressed all of these symptoms and more with my PCP, who has diagnosed me with Fibromyalgia, and have had no luck in identifying any other cause or affliction.

I have been reluctant to post on the internet, as I naturally wanted to believe what I was told by Infectious Disease Doctors that any lingering symptoms would eventually resolve themselves, and in the case of my MD that my Fibro symptoms were unrelated to my past infection. I still feel nearly 100% a lot of the time, but at this point I am inclined to seek a second opinion. The option I am most interested in is The Lyme and Tick-Borne Diseases Research Center through Columbia University. I have not yet contacted them, as I assume the wait time to get an appointment is prohibitive, and the distance for me to travel there is also inconvenient (I live in Pittsburgh). I would also possibly consider an LLMD, although I am admittedly still skeptical of such practices. I am also wary of the prospect of receiving long courses of ABX (I realize that Columbia would likely prescribe this). However, I personally do not believe that a naturopathic approach would be able to relieve my symptoms either (As you can see I am conflicted).

TLDR
I would appreciate any general advice or any referrals near Western Pennsylvania. Also, I would appreciate any feedback or advice from those who have visited the Columbia Lyme Center.

Finally, just to comment on my skeptical stance, I would not be posting this if I was not open to advice from this forum. Like most of us I'm sure, my skepticism has waned as my symptoms have lingered and as medical orthodoxy has fallen short of fully treating my condition and providing me with answers. Having said that, I have not yet let go of the possibility that my symptoms could resolve over time or that I might have to accept having mild symptoms indefinitely (Again, conflicted). I do not mean to offend anyone with my skepticism.

Thank you for reading.

Post Edited (Kevin B) : 11/15/2021 7:38:43 AM (GMT-7)

Hey Kevin.

I’m also in Pitt. I started with a functional medicine Dr. There’s a doc in the south side. He’s decent for being local. I switched in July to someone in Philly who I feel confident with as my progressed had stalled here - but if you’re nearly 100% you may benefit from staying local.

Symptoms are a result of an immune response to a threat. Can that go away on its own? Perhaps the immune system can regain control under the right circumstances. Lyme is smart at hiding from the immune system and anti biotics. It’s impossible to kill it all - you just get to where the immune system can stay ahead.

You likely missed the window to early treat by only taking one day of doxy after the initial bite. That’s not enough to make a difference. Getting a nice dose 2 months in is still a better response than most of us had - 5 of our hospitals all sent me home saying I was healthy. So that’s likely why you’ve faired rather well. There’s also the possibility of co-infections.

Find a doc you feel confident with and stick with the protocol. Most of us see an LLMD or Integrative/functional medicine doctors.

hi and welcome to the forum

many people, myself included, start out with a view that " I just need to take the right antibiotic for a few weeks or months and i will be OK / Cured / In remission". or some version of that.

I have come to learn that this is not really an accurate view of what happens for most people, but a kind of inevitable consequence of the culture we have spent our lives in, unconsciously absorbing. ie - something goes wrong - we go to our doctor - he gives us a pill and, by and large, within a few weeks we are OK again.

at least this is often the case with acute infections ( chronic illness is something altogether different).

but science does not know everything, and our bodies are not just passive sacks of liquid that pharmaceutical drugs like antibiotics disperse into and gradually leach out of again - doing their magic along the way.

we are in fact very complex and sophisticated orgasms with many different self repairing mechanisms and highly sophisticated immune systems. even though they may be somewhat disrupted in Lyme disease.

so, when we take a pharma drug it is in fact never acting in a vacuum - but in tandem with all of these natural systems. No antibiotic would be effective without an at least partially functioning immune system.

this is why AIDS patients continued to die from routine opportunistic infections despite huge doses of antibiotics ( at least until retroviral drugs were invented).

This is extremely important in the context of Lyme disease - as there are as yet no truly universally effective antibiotics for Lyme disease - and so the other part of the equation - the human immune system - becomes a significant factor in recovery or relapse.

this is the reason there is both so much emphasis on other modes of therapy in the Lyme disease community - and so much variety of these adjunct and alternative therapies.
there are a wide array of scientifically proven ways to modulate ( increase, decrease, or change the function of different parts of ) the immune system.
from lifestyle changes - like: diet, exercise, sleep, stress reduction
to mind body techniques - like meditation, yoga, DNRS, massage etc
to herbal medicine - be it Buhner's philosophy, TCM, or Lyme specific brands
to technological approaches - like Infra Red, PEMF, etc etc

from the outside these can all seems bit like whimsical and thin pseudo therapies, sold to those who are perhaps both desperate and easily lead - but to those of us who have been struggling with chronic illness for years - we have come to understand the usefulness and necessity of multi modal approaches to help move the needle in the right direction.

For sure there are some unscrupulous and perhaps deluded practitioners out there - and not every approach works equally well for all people - but to try to tackle chronic Lyme without a multi-modal approach, unless you are incredibly lucky, is somewhat misguided in my view. And i say that as one of the most rational and hard nosed fact based individuals you are ever likely to meet.

i hope the above doesn't come over too preachy - i am just trying to get over that chronic Lyme can be very hard and an open mind and multiple modes of treatment concurrently might be needed.

some of the non pharma ones might be the ones that help you most.
for me diet, and herbs and maybe exercise have certainly helped as much as, if not more than abx.

Garzie said...
many people, myself included, start out with a view that " I just need to take the right antibiotic for a few weeks or months and i will be OK / Cured / In remission". or some version of that.

In the case of bartonella, I found this to be true. However, figuring out what antibiotics I could tolerate that would reliably kill it took several years, and I tried more than a dozen different antibiotics.

So, while it is sometimes true that you just need to take the right antibiotic and you will be cured, the reality is that it's quite difficult to achieve that.

loski01 said...
Hey Kevin.

I’m also in Pitt. I started with a functional medicine Dr. There’s a doc in the south side. He’s decent for being local. I switched in July to someone in Philly who I feel confident with as my progressed had stalled here - but if you’re nearly 100% you may benefit from staying local.

Symptoms are a result of an immune response to a threat. Can that go away on its own? Perhaps the immune system can regain control under the right circumstances. Lyme is smart at hiding from the immune system and anti biotics. It’s impossible to kill it all - you just get to where the immune system can stay ahead.

You likely missed the window to early treat by only taking one day of doxy after the initial bite. That’s not enough to make a difference. Getting a nice dose 2 months in is still a better response than most of us had - 5 of our hospitals all sent me home saying I was healthy. So that’s likely why you’ve faired rather well. There’s also the possibility of co-infections.

Find a doc you feel confident with and stick with the protocol. Most of us see an LLMD or Integrative/functional medicine doctors.

Thank you so much for your post! I live right in the city, and having a treatment option so close to me is a great start. I may PM you for more info on Dr. There if that's ok with you. Thanks again.

Garzie said...
hi and welcome to the forum

many people, myself included, start out with a view that " I just need to take the right antibiotic for a few weeks or months and i will be OK / Cured / In remission". or some version of that.

I have come to learn that this is not really an accurate view of what happens for most people, but a kind of inevitable consequence of the culture we have spent our lives in, unconsciously absorbing. ie - something goes wrong - we go to our doctor - he gives us a pill and, by and large, within a few weeks we are OK again.

at least this is often the case with acute infections ( chronic illness is something altogether different).

but science does not know everything, and our bodies are not just passive sacks of liquid that pharmaceutical drugs like antibiotics disperse into and gradually leach out of again - doing their magic along the way.

we are in fact very complex and sophisticated orgasms with many different self repairing mechanisms and highly sophisticated immune systems. even though they may be somewhat disrupted in Lyme disease.

so, when we take a pharma drug it is in fact never acting in a vacuum - but in tandem with all of these natural systems. No antibiotic would be effective without an at least partially functioning immune system.

this is why AIDS patients continued to die from routine opportunistic infections despite huge doses of antibiotics ( at least until retroviral drugs were invented).

This is extremely important in the context of Lyme disease - as there are as yet no truly universally effective antibiotics for Lyme disease - and so the other part of the equation - the human immune system - becomes a significant factor in recovery or relapse.

this is the reason there is both so much emphasis on other modes of therapy in the Lyme disease community - and so much variety of these adjunct and alternative therapies.
there are a wide array of scientifically proven ways to modulate ( increase, decrease, or change the function of different parts of ) the immune system.
from lifestyle changes - like: diet, exercise, sleep, stress reduction
to mind body techniques - like meditation, yoga, DNRS, massage etc
to herbal medicine - be it Buhner's philosophy, TCM, or Lyme specific brands
to technological approaches - like Infra Red, PEMF, etc etc

from the outside these can all seems bit like whimsical and thin pseudo therapies, sold to those who are perhaps both desperate and easily lead - but to those of us who have been struggling with chronic illness for years - we have come to understand the usefulness and necessity of multi modal approaches to help move the needle in the right direction.

For sure there are some unscrupulous and perhaps deluded practitioners out there - and not every approach works equally well for all people - but to try to tackle chronic Lyme without a multi-modal approach, unless you are incredibly lucky, is somewhat misguided in my view. And i say that as one of the most rational and hard nosed fact based individuals you are ever likely to meet.

i hope the above doesn't come over too preachy - i am just trying to get over that chronic Lyme can be very hard and an open mind and multiple modes of treatment concurrently might be needed.

some of the non pharma ones might be the ones that help you most.
for me diet, and herbs and maybe exercise have certainly helped as much as, if not more than abx.

Thank you so much for your post. I do not think that you came off as preachy at all but rather I thought you were quite articulate weaving together your points. Up until now I have mostly read about the lyme infection, but your post makes me realize that I should educate myself further on the immune system.

Also, your comment on the effectiveness of diet, exercise, and supplements vs abx in your case is quite helpful and inspiring. Thanks again.

Quin said...

Garzie said...
many people, myself included, start out with a view that " I just need to take the right antibiotic for a few weeks or months and i will be OK / Cured / In remission". or some version of that.

In the case of bartonella, I found this to be true. However, figuring out what antibiotics I could tolerate that would reliably kill it took several years, and I tried more than a dozen different antibiotics.

So, while it is sometimes true that you just need to take the right antibiotic and you will be cured, the reality is that it's quite difficult to achieve that.

Thank you for your post. I thought that I was lucky in a way for my infection progressing as quickly as it did so that I would be spared of having to experiment with an antibiotic regimen. This has always seemed so daunting to me but perhaps that is in my future.

I hope that you have found lasting success in your treatments. Thank you again.

Kevin,

Hello and welcome. My story is a lot different from yours, as it took me years to find out what was wrong with me. When I finally had a positive Lyme test, the doctor (Functional MD) gave me a few options. I agreed to try antibiotics for a month. She prescribed minocycline. I started feeling worse during the first week, and the doctor told me to stop. She stalled on me.

At that point, I at least had the knowledge that I had Lyme and ehrlichia and started learning on my own. The idea of long term and multiple antibiotics freaked me out. So did the idea of “trying” a drug and taking lower doses or stopping and restarting. It went against everything I knew about antibiotics. The pharmacy instructions always state to take the full amount or you can get some drug resistant infection or some other dire prediction.

Bottom line, I educated myself, self treated using herbs and supplements following Stephen Buhner’s protocols, and found an LLMD willing to help me. I do take Rx antifungals and antiparasitics. Those have actually helped me feel better and improve symptom-wise.

“I was told by Infectious Disease Doctors that any lingering symptoms would eventually resolve themselves”

- IMO, that’s a lie from the pit of he//. I suppose it could happen, but not likely.

I went undiagnosed and untreated for 6.5 years. My initial symptoms slowly improved over 4-5 months, but my body never felt normal again after that, even when I wasn’t experiencing “symptoms.” Symptoms remained. Others came and went randomly without any predictability. New symptoms emerged as the years went by.

All the while, I could feel my body being altered in inexplicable ways and instinctively knew something was wrong with my immune system. The allergist was no help. He knew next to nothing about the immune system. So much for Allergy and Immunology.

Six years after onset, I got acute bronchitis and my symptoms went full blown with inflammation that spread from one body area to another. At first, I didn’t even realize it was the same mystery illness I’d had for years, as the symptoms presented differently.

Eventually, I got desperate enough to pay out of pocket to see a Functional MD. It’s scary when you realize that doctors don’t know what you thought they did and that few are interested in solving mysteries or chronic problems. if you want that, you have to look for alternative doctors who have broader knowledge, rely more on clinical experience, and know and use far more lab testing than anything conventional doctors know.

I would advise finding an LLMD. It may take a while to get an appointment. In the meantime you could self treat with herbs and work on diet, sleep, and stress, take supplements to support your immune system, and learn about detoxing.