Dr. "S" in Iowa

[JBJBJB]

I decided to go back to see Dr. S again, just for one hour consulting during the week of 26 of October. I won't do any IVs. Dr. S agreed to see me.  Does Dr. S treat possible Lyme patient? I don't know if I have Lyme or not. But I do know Flagyl works wonders on me.

 

 

[lynnie_sydney]

JB – I'll let Maz or Kim confirm this, but my understanding is no , Dr S. is not an LLMD.

I would think that an Igenex test would be the best thing to get done so that you'll have a better idea and (if looking like it may be) you could then go consult an LLMD. As great an AP doc as Dr S. is, if you have Lyme, then you need a Lyme treatment protocol. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Kim]

Dr. S. is NOT a LLMD.

[JBJBJB]

I heard you both, Lynnie and Kim. I will try to get it done this Monday. I wonder how long does it take to get the results? JB

 

[Kim]

My results took about two weeks, but that's been a while.  Remember you need to turn in your sample early in the week and I would recommend you deliver it yourself to the shipper to make sure it gets done properly.

kim

[JBJBJB]

[user=40]Kim[/user] wrote:

Dr. S. is NOT a LLMD.

This is my test from Igenex

IGG Results

CDC/NYS              Negative

         18  KDa.        (-)

         22  KDa.        (-)

**23-25 KDa.         (-)

         28 KDa.         (-)

         30  KDa.        (-)

    ** 31 KDa.         + +

    ** 34 KDa.         (-)

    **39  KDa.         (-)

    **41  KDa.         IND

        45  KDa.         (-)

        58 KDa.          +

        66 KDa.          (-)

       73  KDa.          (-)

**83-93 KDa.        (-)

All my IgM were negative

CDC/NYS              Negative
Lyme IgM Western Blot

         18  KDa.        (-)

         22  KDa.        (-)

**23-25 KDa.         (-)

         28 KDa.         (-)

         30  KDa.        (-)

    ** 31 KDa.         (-)

    ** 34 KDa.         (-)

    **39  KDa.         (-)

    **41  KDa.         (-)

        45  KDa.         (-)

        58 KDa.          (-)

        66 KDa.          (-)

       73  KDa.          (-)

**83-93 KDa.        (-)

I emailed Professor Nicolson, and he said,

“[/color”>Yes, I believe that it is likely that you have Lyme (from the three bands positive), and thus using only minocycline would not be expected to completely clear your system of all Lyme-associated infections.  The reason that the IgM is not high is that this is usually only high during the initial stages of the diseases.  Frequently Lyme patients do not show high IgM levels because the intracellular location of the Lyme-associated infections leave only a small amount of extracellular antigen to trigger an IgM immune response“[/color]

He kindly sent me Joe Burrascano treatment guideline.

I want to post this piece of information on this topic of “Dr. S in Iowa” so that people will know why I have not been responded well on minocyclin.

Thank you all for your prayers and support as I am moving to have my next treatment of Lyme Disease. :doh:

 

JB

 

 

 

 

[lynnie_sydney]

JB – I am so happy that you finally have some answers. We all know that you have been struggling badly – but now at least you know what you are dealing with – which must give you a feeling of relief. Now you need to find the LLMD with whom to work…there'll be valuable input on this from others I know. A new beginning, JB!!!! I am so happy for you. Lynnie

P.S. Might it be an idea to post that response from Garth Nicholson on a new thread as well as here? It seems like a pretty important opinion re Lyme which might also be useful to others in its own space.    

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[A Friend]

[user=266]JBJBJB[/user] wrote:

Yes, I agree. I am trying to rule out my allergic reaction by stop and re-enter the minocyclin. This will give me some clue, I hope.

This is the second day I take the mino, and I am coughing like nuts. I also have rashes, blister type of rashes. Not a lot, but a few around my hands.

 Thanks for the prayers. I will write back.

JB
 

JB,

Sometimes the difficult reactions to IVs and Minocin “can be” because of what it is getting rid of, and the die-off from it.  The hard part is determining whether it is “allergy” or “herxheimer”  of “what?”.  Guess die-off/herxheimer from an effective med can duplicate allergy, and even cause related illness.   

After coming home from Ida G. the first time, and beginning Minocin, I began coughing incessantly.  It was during Jan-Feb, and there was lots of flu going around, and my doc's nurse at that time (when I called) said I had flu.  However, I kept on coughing so badly, I finally called again.  The same reply.  (I never got to talk to my local physician.)  

In the middle of the night (wee hours of a Saturday morning after about 5 days of this), my husband told me to put on my robe, that we were going to the emergency room.  The ER physician ordered a chest x-ray.  Guess what?  Pneumonia, the first time in my life. 

It was said to be “atypical pneumonia” — other names for this are:  (are you ready for this???) mycoplasma pneumonia and/or walking pneumonia.  Dr. S in Iowa told me to get off the Minocin and let my local physician treat the pneumonia; and when the pneumonia was clear, to get right back on the Minocin on M-W-F twice a day. 

It was immediately after the pneumonia that I felt better than I had felt in a long, long time.  And my progress was very swift after this.  I believe having had the IVs for five days, and then getting on brand Minocin (pulsed MWF twice daily) after I returned home, this was killing the myco's.  Sometime we do have to “endure” to get better.  But, then — like you JB — I didn't realize what was going on would turn out so well.  I'd read Dr. Brown's book, but other than that, I was new to Herxheimer, etc.

Wish we knew for sure in your case just what is going on.  Hang in there, and I'll bet you can figure it out!

AF

[A Friend]

[user=302]Devie[/user] wrote:

This is good to read.  I have a June appt with Dr S and they told me to stay in the Delux also.  Did you need reservations for the Super 8?

Glad I read that!

Devie

Good luck- let me know how it goes!

Devie,

Back when I went to Ida G, the Delux was the only one.  It was very clean and cozy (the steam heat was in the floor, and didn't dry out sinuses), and the people were absolutely wonderful, and helpful.  They built on an addition, with much larger rooms, and refrigerators, etc. later while I was coming.  

I haven't had to go back since the new motel was built.  But, if the same people had the Delux, they're like old friends.  I'd have to stay there.  She (Carole) has even maintained a composition book for patients' stories (5 or 6 of them at last count) which I began with the lst one, the last time I was there… back about 1999.  When RBF honored Dr. S at a meeting, Carole told me on the phone that someone had come and copied all the patients' stories in the books and given it to Dr. S at that meeting.  You'll love Dr. S, his staff, the hospital, and whereever you stay…  Ida Grove is a charming place.   

AF

[JBJBJB]

Okay, I will cross posting this message here to close up my story of “Dr. S in Iowa” and hopefully some one who is going to see Dr. S in Iowa will continue this story and will update patients information about Iowa treatment.

By the way, I wrote to Dr. S and told him about my Lyme test results. I really really really wish Dr. S could treat my Lyme. :crying:

Update

I got my confirmation test of IgG 31 KDa Epitope Test (#489). It is positive.

This is how I feel —- :roll-laugh::blush::crying::doh::headbang:    I Finally Have A Diagnosis !!!!

I already made the appointment to see Dr. C in Missouri on March 18.

Wish me luck!

:JB-L(Lymie)

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