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Ashleyann82587
Regular Member


Date Joined Sep 2017
Total Posts : 205
   Posted 5/4/2018 10:33 AM (GMT -6)   
Hey guys! So I just started treatment with Dr . Steven P in Ct. He has started me on mono therapy with tetracycline 250mg BID. 2 weeks on 2 off before we add in another drug. I'm on day 11/14 and have awful dizziness, vertigo, I feel absolutely terrible. I had been treating with Jemsek in DC since Nov and experienced the same issue with minocin. Does anyone else experience awful symptoms/side effects from these cycline drugs? I panic because I don't know if it's a HERX due to crossing the BBB or a babesia flare. As I have Duncani also which I did treat with mepron, Zithromax, and super arteminisin, though I don't think I treated it long enough. What do you think?

Post Edited (Ashleyann82587) : 5/4/2018 10:40:02 AM (GMT-6)


Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 276
   Posted 5/4/2018 10:46 AM (GMT -6)   
It could be a babesia flare, but I think dizziness it listed as a side effect from minocin.

Ashleyann82587
Regular Member


Date Joined Sep 2017
Total Posts : 205
   Posted 5/4/2018 11:16 AM (GMT -6)   
This happened on about day 7 of the med. I did not have the dizziness before(I was Dx with babesia in October) or through babs treatment. Do you think it could be a bad HERX since the drug crosses the BBB?

Sheeks175
Regular Member


Date Joined May 2016
Total Posts : 258
   Posted 5/4/2018 1:03 PM (GMT -6)   
Minocycline can cause dizziness. Not sure about tetra. It could maybe be a herx. Just out of curiosity why did you switch from Dr J to Dr P? I am considering both of them, but leaning towards dr J now...

Spanish
Regular Member


Date Joined Sep 2017
Total Posts : 140
   Posted 5/4/2018 1:11 PM (GMT -6)   
Minocycline did exactly the same to me it got progressively worse for 5/6 weeks then started to improve Im jot sure if it was a herx or just the med but Ive been taking it for 6 months now and im still a little dizzy but all my other symptoms are much better

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32691
   Posted 5/4/2018 1:20 PM (GMT -6)   
Sheeks175 said...
Just out of curiosity why did you switch from Dr J to Dr P? I am considering both of them, but leaning towards dr J now...


I'm also curious.


I'm also impressed with what I've read/heard re: SP He's my second choice.

But, I don't know if SP does Phone appts...and if the appts are spaced 3-4 months apart.
That is something I also considered when going to the J clinic. Coming from west coast Canada - couldn't afford to be going every month...or two months.
With the J clinic, I only have to fly twice per year.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Sheeks175
Regular Member


Date Joined May 2016
Total Posts : 258
   Posted 5/4/2018 3:50 PM (GMT -6)   
Girlie said...
Sheeks175 said...
Just out of curiosity why did you switch from Dr J to Dr P? I am considering both of them, but leaning towards dr J now...


I'm also curious.


I'm also impressed with what I've read/heard re: SP He's my second choice.

But, I don't know if SP does Phone appts...and if the appts are spaced 3-4 months apart.
That is something I also considered when going to the J clinic. Coming from west coast Canada - couldn't afford to be going every month...or two months.
With the J clinic, I only have to fly twice per year.


True. I fly from Seattle to San Fran every 4 months and that is expensive. Couldn't imagine getting my butt out to Wilton CT. Flying into New York, renting a car, getting a hotel. Too expensive.

Ashleyann82587
Regular Member


Date Joined Sep 2017
Total Posts : 205
   Posted 5/4/2018 3:52 PM (GMT -6)   
I treated at Dr J for 5 months. I saw little to no improvement. It is a hard core protocol. My body couldn't take it. Also the communication is awful. Takes them several days to return your call if you are having a problem.
Dr P and his PA were awesome. I have only had one appt there so far. He's very pro herbal which I love.

Ashleyann82587
Regular Member


Date Joined Sep 2017
Total Posts : 205
   Posted 5/4/2018 3:56 PM (GMT -6)   
I'm not sure if they do phone appointments. What I like is they gave me a pulse protocol to follow then told me when I'm done to call for instructions.(no charge) so I won't have to keep going every time they add or change a med.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32691
   Posted 5/4/2018 4:49 PM (GMT -6)   
Ashleyann82587 said...
I treated at Dr J for 5 months. I saw little to no improvement. It is a hard core protocol. My body couldn't take it. Also the communication is awful. Takes them several days to return your call if you are having a problem.
Dr P and his PA were awesome. I have only had one appt there so far. He's very pro herbal which I love.


So you find the protocol heavy - I know it's generally three abx or two abx plus antimalarial - but i find taking them only 7 -10 days a month easier to tolerate than taking two abx everyday (which I was prescribed with my previous llnd)

Yes, communication is not great at the J clinic. I think they're working on improving it though. I called because of a med reaction causing two lesions...and I was called back within a few hours. Then I sent a photo and they called me back the next morning again.
Hopefully they continue to work on that aspect...another issue was trying to schedule an appt with Dr. J himself - which I initially was told I could...hasn't happened yet...
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32691
   Posted 5/4/2018 4:50 PM (GMT -6)   
Ashleyann82587 said...
I'm not sure if they do phone appointments. What I like is they gave me a pulse protocol to follow then told me when I'm done to call for instructions.(no charge) so I won't have to keep going every time they add or change a med.


So he does pulsed protocols...but not as aggressive as Dr. J's clinic...


I hope you do well, Ashleyann !!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32691
   Posted 5/4/2018 4:51 PM (GMT -6)   
Ashleyann82587 said...
I'm not sure if they do phone appointments. What I like is they gave me a pulse protocol to follow then told me when I'm done to call for instructions.(no charge) so I won't have to keep going every time they add or change a med.


How often are the appointments with Dr. P?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32691
   Posted 5/4/2018 4:52 PM (GMT -6)   
Sheeks175 said...
Girlie said...
Sheeks175 said...
Just out of curiosity why did you switch from Dr J to Dr P? I am considering both of them, but leaning towards dr J now...


I'm also curious.


I'm also impressed with what I've read/heard re: SP He's my second choice.

But, I don't know if SP does Phone appts...and if the appts are spaced 3-4 months apart.
That is something I also considered when going to the J clinic. Coming from west coast Canada - couldn't afford to be going every month...or two months.
With the J clinic, I only have to fly twice per year.


True. I fly from Seattle to San Fran every 4 months and that is expensive. Couldn't imagine getting my butt out to Wilton CT. Flying into New York, renting a car, getting a hotel. Too expensive.


You can't fly to Wilton, CT?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Ashleyann82587
Regular Member


Date Joined Sep 2017
Total Posts : 205
   Posted 5/4/2018 7:00 PM (GMT -6)   
Dr. P's response when seeing how many drugs I was on at once was. " if you take so many at a time, how do you know what's helping? Or what you are reacting to?" Makes total sense to me. Some people handle his protocols fine. I didn't...maybe bc I'm so small? Idk. Dr. P uses 2 abx plus oil of oregano. He rotates and pulses his meds. I am struggling now with tetracycline. It seems any drug from this class I have a horrible time with.
I'm not sure when my next follow up will be. I have to complete another pulse then call for instructions. I'm guessing probably 10-12 weeks.

Ashleyann82587
Regular Member


Date Joined Sep 2017
Total Posts : 205
   Posted 5/4/2018 7:02 PM (GMT -6)   
I live in East Lyme, CT 😑 So I don't have to travel too far now. I also see Dr. I, NP out of Fairfield, Ct I'll be starting a modified Cowden protocol too and possibly LDI in 5 weeks. Have any of you tried LDI?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32691
   Posted 5/5/2018 1:12 AM (GMT -6)   
Ashleyann82587 said...
Dr. P's response when seeing how many drugs I was on at once was. " if you take so many at a time, how do you know what's helping? Or what you are reacting to?" Makes total sense to me. Some people handle his protocols fine. I didn't...maybe bc I'm so small? Idk. Dr. P uses 2 abx plus oil of oregano. He rotates and pulses his meds. I am struggling now with tetracycline. It seems any drug from this class I have a horrible time with.
I'm not sure when my next follow up will be. I have to complete another pulse then call for instructions. I'm guessing probably 10-12 weeks.


The J clinic is generally (for the most part) two antibiotics plus an anti-malarial or three antibiotics.


Does Dr.SP only prescribe one antibiotic at a time? not two?

LDI was getting a lot of attention a couple years ago. It seems to have fallen by the wayside.
a few forum members have tried it...with one of them getting some benefits...for awhile...but then it stopped working.

I came 'this close' to trying it. I had the syringes in my fridge to administer orally...and then decided not to.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 5/5/2018 1:15:19 AM (GMT-6)


Ashleyann82587
Regular Member


Date Joined Sep 2017
Total Posts : 205
   Posted 5/5/2018 10:24 AM (GMT -6)   
I was on 4 with JSC.

Dr. P uses two at a time plus compounded oil of oregano. He adds in an antifungal too. I just started there so I'm in the beginning of his protocol.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32691
   Posted 5/5/2018 10:57 AM (GMT -6)   
Ashleyann82587 said...
I was on 4 with JSC.



Really? Oh maybe different weeks? (not all taken on same days)

I am on one extra antibiotic on two days per cycle - flagyl (in addition to the two abx and Mepron).....


Keep us posted on your progress - hope it is successful for you!
I’ve watched some of his videos with DP and he did impress me. Also sounds like a compassionate dr.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 5/6/2018 1:01:15 PM (GMT-6)


dbwilco
Regular Member


Date Joined Mar 2016
Total Posts : 268
   Posted 5/6/2018 3:42 AM (GMT -6)   
ashleyann...i also see dr p...have since late 2016, with a 4 month break when i was "cured" (my faulty decision)...and we are neighbors, i live walking distance to rocky neck....if you have questions let me know

Post Edited (dbwilco) : 5/6/2018 5:08:37 AM (GMT-6)


Ashleyann82587
Regular Member


Date Joined Sep 2017
Total Posts : 205
   Posted 5/6/2018 11:09 AM (GMT -6)   
Someone close by!!! Would you mind emailing me so we can keep in touch?


** I edited out your email. We're not permitted to post it.

You can add it to your profile and enable your email that way.

Post Edited By Moderator (Girlie) : 5/6/2018 11:43:54 AM (GMT-6)


dbwilco
Regular Member


Date Joined Mar 2016
Total Posts : 268
   Posted 5/6/2018 12:40 PM (GMT -6)   
Ashleyann, sure, i enabled my email, drop me a line...

sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 184
   Posted 5/7/2018 11:02 AM (GMT -6)   
I was curious if anyone can comment more on how Dr P or his NP treats lyme and bartonella, i wanted to confirm if they do or do not use rifampin or rifabutin. thanks

dbwilco
Regular Member


Date Joined Mar 2016
Total Posts : 268
   Posted 5/7/2018 11:44 AM (GMT -6)   
he is more knowledgable than most llmds, partly because he has taken literally all the drugs for bart (including ivs)...he tends to feel that repeat pulses of tetracycline, together with other drugs can knock bart down without the risk of some of the harder drugs...but yes he DOES use them sometimes, just not usually at first...but he is VERY open to modifying protocols...in one of his videos, dana parish, a patient and now business partner mentions that Dr P offered rifampin to her but she declined based on potential side effects

my attitude has been, if nothing really kills this stuff forever, why take the riskier drugs? tetra def hits bart for me, in terms of herxing when taking it (gastritis, shins, red eyes)...but then again i still have it...so...

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1522
   Posted 5/7/2018 2:02 PM (GMT -6)   
Notime4lyme said...
It could be a babesia flare, but I think dizziness it listed as a side effect from minocin.


it's not a side effect of minocin. these side effects are very rare. it's a herx. at least this is my opinion, back in the past i fooled myself to believe the same "side effects" thing but now i have the proof i was a fool.

i first took minocin 3x100mg back in late 2014/early 2015. when i started taking in, 36 hours later, the following things happen (which NEVER happened to me before)
- terrible had pressure
- dizziness
- photophobia
- half of my face started to go numb
- i was crying uncontrollably at night for no reason
- my heart started to race fast and beat erratically (i used to have this in the bast but never like that, i was not able to climb stairs)
- severe muscle twitches all over my body, that could be visible to others (i usually felt them but now my colleagues at work could see my arm muscles moving too).

- after 4-5 days of this i decided this was probably intracrannial pressure (a very bad and possibly life threatening side effect from mino) and i can die from it and take a few days break. my symptoms vanished. i felt much better than before...

- i restarted treatment with 200mg a day instead of 300 a day , and same thing happened, so lowering dose did not help much, for most days i was not able to tolerate more than 100mg a day
- i barely managed to take 28 days of this, with 3-4 complete breaks

- fast forward 4 years. same antibiotic, from same producer, in same dosage. i noticed almost no symptoms. i take this for 8 months now ... so ? where are the side effects of minocycline now !?

i tell u what happened, the first time i took it it was just a herxheimer reaction. second time i had very low germ load, so no herx. no herx, no "side effects".

looking back at this , if i knew what was going on, i would have never stopped. not for one day...

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32691
   Posted 5/7/2018 2:21 PM (GMT -6)   
Dizziness is a side effect - may not affect every one. it's listed as a common one along with 'spinning sensation' and 'light headedness'.

When i started mino - i got dizzy/spinning sensation right away with first dose...it wasn't a herx.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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