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Going to see MD (Finally) & I would like advice on testing etc ...

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Posted 1/5/2018 6:33 PM (GMT 0)

Mb244 said...
So ...

The appt went as most on here said it would

The doctor was a nice guy and seems knowledgable and had nice bedside manner, but he wanted to look for any other casue other than Lyme

He told me if I took antibiotics within 3 weeks of a bite (i took two - but they were short/low dose, see original post) then there is no lyme in my body. The Doxy killed it all.

He was open to the idea that I could have Lyme related after effects since he said the migranes/stiff neck/flu+hangover symptoms did vibe with what he would expect a person with Lyme to possibly present with.... but the extremity joint issues I have had recently (small joint aches in hands/feet) seemed to steer him towards another culprit ... and he wants me to see a rheumatologist (RA/Lupus/etc). He opted not to test my Testosterone levels (low energy) since it wasnt first thing in the morning, but he is running an inflamation panel and complete blood panel

I had a body exam
Blood drawn at his office
and x rays of hands and neck

Awaiting blood work results now ...

I would get more treatment a.s.a.p. - You were undertreated. you don't want to wait until you have more and more symptoms.
Are you considering seeing a LLMD?

It's fine for a Dr. to rule out other 'things' when it's not certain if it is lyme disease - but it needs to be done quickly...in a timely manner.
But, in your case - you had a known tick bite with subsequent symptoms...no need to rule out other diseases/conditions.
Posted 1/5/2018 9:17 PM (GMT 0)
Sorry I missed your post from a couple days ago. I try to check in at least once a day if I can.

Yep, totally not surprised the doctor brushed off the possibility of persistent infection and declared you "CURED". I believe that is the standard of care for 99.9% of the doctors that take insurance. It's sad, it's scary, it's unbelievable. They will have patients chasing their tail for years considering a Lupus, MS, RA diagnosis when it was a slam dunk case of a treatable infection.

Those are the long odds I was referring to with my previous posts.

Unfortunately LLMD's cannot bill through insurance because the insurance companies will not only refuse to pay the invoice, but will drop them from the network, and or report them to medical boards.

My LLMD said he would be glad to test me for co-infections if I wanted to pay the money. However, he felt like the co-infection tests only test for one or two strains when in fact there are 20-30 strains of each major co-infection that the tests do not pick up. He also explained that his treatment protocol will cover all the major co-infection bases.

I elected not to pay the $$$ for the co-infection tests. It was something like $600. I am glad I did not pay. Observing my reactions to the various aspects of the treatment protocol tells me more than what that testing would. In about a week I start Bartonella treatment. I am highly suspicious that I am indeed infected with Bart. I will know soon.

If you have any questions. Please do not hesitate to ask.
Posted 1/5/2018 11:32 PM (GMT 0)
Missouri - have you treated Babesia yet?

Dr. J. has the same view as your LLMD - he treats the three B's. Assumes everyone has it.
Posted 1/6/2018 2:31 AM (GMT 0)

Missouri said...
Sorry I missed your post from a couple days ago. I try to check in at least once a day if I can.

Yep, totally not surprised the doctor brushed off the possibility of persistent infection and declared you "CURED". I believe that is the standard of care for 99.9% of the doctors that take insurance. It's sad, it's scary, it's unbelievable. They will have patients chasing their tail for years considering a Lupus, MS, RA diagnosis when it was a slam dunk case of a treatable infection.

Those are the long odds I was referring to with my previous posts.

Unfortunately LLMD's cannot bill through insurance because the insurance companies will not only refuse to pay the invoice, but will drop them from the network, and or report them to medical boards.

My LLMD said he would be glad to test me for co-infections if I wanted to pay the money. However, he felt like the co-infection tests only test for one or two strains when in fact there are 20-30 strains of each major co-infection that the tests do not pick up. He also explained that his treatment protocol will cover all the major co-infection bases.

I elected not to pay the $$$ for the co-infection tests. It was something like $600. I am glad I did not pay. Observing my reactions to the various aspects of the treatment protocol tells me more than what that testing would. In about a week I start Bartonella treatment. I am highly suspicious that I am indeed infected with Bart. I will know soon.

If you have any questions. Please do not hesitate to ask.

Missouri I appreciate the info

can you share with me his Tx protocols?

FWIW - I am not bashing my GP from today but I will agree that it does seem as though the medical education system as a whole is producing MDs with a very myopic view of Lyme. I havent been dealing with this for long but when I was first bitten, an LPN whom I trust and have a lot of respect for told me the same thing: if you took two wks of antibiotics you are cured and dont have a pathogen/bacteria in you ... its cured so look for other causes. The same thing happened today. Hes from the Northeast and actually admitted that he didnt think Lyme was prevalent in the SE

The silver lining here is I told him my concerns and we actually talked about this ^^ and hes going to test for the lyme and then send me onto a specialist that has written papers on Lyme... so we shall see
Posted 1/6/2018 2:38 AM (GMT 0)
Mb - that's good news that your Dr. is supporting you.

Do you know what type of specialist he's sending you to? An ID Dr.?

I hope he is a Lyme Literate Dr.
There are papers written by Doctors negating Chronic lyme needs long-term treatment.
So, just be prepared for that.
Posted 1/6/2018 3:16 AM (GMT 0)
girlie - its the doctor I emailed you about

she is a lyme researcher at vandy and is in Infectious Dz

He also wants me to see a rheumatologist
Posted 1/6/2018 3:24 AM (GMT 0)

Mb244 said...
girlie - its the doctor I emailed you about

she is a lyme researcher at vandy and is in Infectious Dz

He also wants me to see a rheumatologist

Oh my failing memory! Thanks for the reminder!
Posted 1/15/2018 7:15 PM (GMT 0)
So I go see the ID specialist this Thursday and I would appreciate any of the members to chime in and let me know if there is anything I should do or have prepared.

The GP was a really nice guy - and I know he was just doing his job and ruling out all causes - but after I told him I had taken the standard Abx treatment preventative a few weeks after my tick bite I could tell he went into its-anything-but-lyme mode... that said it appears the RA tests came back clear. The xrays of hands / neck yielded clear results, so no arthritic ailments based of the x rays taken

Here is the ID Doc and her CV: https://www.vumc.org/health-policy/person/karen-bloch-md-mph-fidsa

Karen Bloch is Associate Professor of Health Policy and Medicine (Infectious Diseases) at Vanderbilt University Medical Center. Dr. Bloch graduated from medical school at the University of Virginia (MD, 1990). She completed internship and residency at Yale-New Haven Hospital (New Haven, CT) in 1993, and infectious disease fellowship at the University of California, San Francisco (UCSF) in 1997. She received her Master’s in Public Health (MPH) from the University of California, Berkeley in 1996. She is board certified in Infectious Diseases.

Her research interests include infections of the central nervous system and arthropod-borne infections. She has been an investigator on several Emerging Infections Program (EIP) studies sponsored by the Centers for Disease Control and Prevention, and is currently a co-investigator for a study evaluating for novel and emerging tick-borne pathogens in Tennessee.

She has been awarded the William Schaffner Teaching award in infectious diseases in 2003, 2008, and 2011. She has contributed to the Infectious Diseases Society of America guidelines on the management of encephalitis (2008) and co-authored the International Encephalitis Consortium recommendations on the case definition for encephalitis (2013).
Posted 1/15/2018 9:14 PM (GMT 0)
Hey MB- to answer your question above. My LLMD uses a "slow and steady" protocol. He said he would usually start with Doxycycline, but didn't want to in the summer due to sunburn side effects.

Month 1 Ceftin
Month 2 Zithromax
Month 3 Flagyl
Month 4 Doxycycline
Month 5 Clindamycin+Quinie 10 day rotation with Clarythromycin plus Plaquenil for Babesia
Month 6 Rifampin for Bartonella.

Anyways I just finished month 5. The last 3-4 weeks I have felt pretty good. I am doing sooo much better than when I first started (knock on wood).

Good luck with your upcoming appointment. I suspect my long odds still apply to this doc as she is involved with the IDSA. 99% chance she will not even consider tick borne infections a possibility. Hopefully that is not the case, but you never know right?

I think the best thing you can take is a detailed symptom log and any previous tests you can bring.

Please update us after the visit.

If the doctor is not interested in helping you, there are people here that can help you find a doctor that will help you.
Posted 1/15/2018 9:54 PM (GMT 0)
@missouri - thank you for the info. very interesting. can you share with me who your LLMD is? Do you know if the protocol you listed out is common or at least somewhat common among LLMD?

Why does your MD take a detour in month 5 and switch to a malaria / babesia Tx?
Posted 1/15/2018 10:18 PM (GMT 0)
From what I read here I think my LLMD uses a different approach than many of the others I see.

In contrast to my daily dosing, some LLMD's do pulsing
In contrast to my single med at a time, some LLMD's do 2-3 antibiotics at a time (combination therapy)
In contrast to my oral therapy, some LLMD's do IV antibitic therapy. I think mine does if you fail orals, but not sure.

As for the course of Babesia meds- my LLMD offered to test for Babesia, but the high cost and low detection rates may be a waste of money when you could just go ahead and treat for it.

Not sure why the particular order is chosen other than trying to keep Doxycycline out of summer time. Not sure if it get changed up for different patients.

Initially, based on my lack of night sweats and air-hunger I thought that I didn't have Babesia. However I am re-thinking that since I have had 3-4 pretty awesome weeks with no bad days during the Babesia meds. No twitching, no life sucking fatigue, no leg cramps. Wow I was surprised.

The next med targets Bartonella. I am going to see if I crash without any meds before I start the Rifampin.

e-mail me if you would like more detail. It should be visible if you click my name.
Posted 1/15/2018 11:01 PM (GMT 0)
Missouri - how come only one month on Babesia meds? I've read several times that it requires minimum 4-5 months of treatment.

What is your Dr. take on it?
Posted 1/16/2018 1:47 AM (GMT 0)
I know, I have read a lot about how stubborn Babesia can be too. I don’t know the reasonings behind the length of course. It’s actually 40 days for Babesia.
Day 1-10 Clindamycin and quinine
Day 11-20 clarithrmycin and plaquenil
Day 21-30 clindamycin and quinine
Day 31-40 clarithromycin and plaquenil

I have my first follow up appt a week from Wednesday. I’ll try to find out more.

I am so surprised how well I did on The protocol. No side effects, no Herx, just improvement. Maybe Babesia is what I had all along. I don’t know. I think clindamycin is a strong effective med for Borrelia too, maybe it just knocked back Lyme so well.

I read an article where DR J talked about how effective clindamycin is.
Posted 1/16/2018 1:51 AM (GMT 0)
What i've read about Babs isn't just about Babs being stubborn...but treatment must be as long as the red blood cell life - which is 4 months...


I know Dr. J uses Clindamycin IV...maybe oral as well?


Keep us posted, Missouri. BTW - I've forgotten your timeline - how long did you have LD before starting treatment?
Posted 1/16/2018 2:20 AM (GMT 0)
The tick bite that left the lump was about 2.25-2.5 years before i started treatment which was just this past august
Posted 1/18/2018 3:23 AM (GMT 0)

Missouri said...
The tick bite that left the lump was about 2.25-2.5 years before i started treatment which was just this past august

Can you send me or post the details of the Tx? I am heading to the Specialist tomoorow and would like to show her something from a LLMD and see what she says
Posted 1/18/2018 3:26 AM (GMT 0)

Missouri said...
Hey MB-

Good luck with your upcoming appointment. I suspect my long odds still apply to this doc as she is involved with the IDSA. 99% chance she will not even consider tick borne infections a possibility. Hopefully that is not the case, but you never know right?

I think the best thing you can take is a detailed symptom log and any previous tests you can bring.

Please update us after the visit.

If the doctor is not interested in helping you, there are people here that can help you find a doctor that will help you.

So I just saw this part of your post and re-read it.

You dont think being a part of the IDSA is a good thing?
Posted 1/18/2018 3:47 AM (GMT 0)
Those in the IDSA camp say a few weeks of abx is enough and if you still have symptoms you have PTLDS
and you're stuck with those symptoms.

They say Lyme Disease is hard to get and easy to treat.
Posted 1/18/2018 3:20 PM (GMT 0)
Being a "member" of the IDSA means they probably subscribe to their theories: testing for TBD's is good, 2 weeks of Doxy and you are cured, only 8 states have significant Lyme case count, you must have a bulls-eye to have a tick borne illness, etc., etc. more and more BS.

The IDSA ostracizes, ridicules, and goes after doctors that question their conclusions on TBDs.

According to their statements - they have tick borne diseases all figured out and under control, and these infections are nothing but easy to cure nuisance infections. Which is more total BS. Most IDSA doctors will not even consider the possibility of chronic infections or they would be shunned by their peers and insurance networks. It's a sad state of affiars.

I truly hope that is not the case today for you and we can add another Lyme Literate doctor to the lists, but I fear the odds are not in your favor.

Good luck today, please let us know how it goes.
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