Sat, 18 Apr 2020 19:39:36 GMT
Hi Dr Tedone,
I know this is too long but wanted to share it in the event somebody/anybody can benefit from it in anyway or shape. Im playing out my hand based in the incredible insight that youve provided already and I hope to come out on the right side of it albeit it doesnt really feel that way at the moment as I continue to degenerate over the past 10 mos neuro-muscularly slowly but measurably. Its heartbreaking as all PALS know too well.
I am following your program with Deanna albeit I am not diagnosed w ALS at this time. I tested negative by EMG at Stanford in November and did not meet the Neurologists loss of strength standards this past Feb to merit another EMG in her opinion. They are kind of silly standards as many PALS may know as they dont even come close to measuring the strength lost one experiences pre diagnosis. So I am on the unenviable "person to be watched"at Stanford Neurological Clinic and go back in 3 mos to be re-evaluated. Unfortunately I feel that ALS wont wait on a diagnosis from anyone and more importantly I would naturally like to save as much function as I can and get to the MSC Stem Cells that you endorse for Deanna if in fact ALS is the culprit which it appears to be as Ive tested negative for every other disease known to mankind and my muscles have twitched for about a yr now and have wasted and weakened quite a bit. Im very weak in the legs/groin/buttocks after having been quite strong there as a lifelong good athlete, The other extremities are right behind the legs. No bulbar/mouth symptoms at this time although I think I see like "scalping bumps" around the edge of my tongue.. I ve lost a lot of strength and 20 lbs from 190 to 170lbs..
It is only per your great recommendations here that I was able to even learn that Lyme was in play after I had a negative Elisa test for Lyme via my GP last June. The fact is Id be in the dark on Lyme today if not for you! By your insight, I then tested positive by IgG ( present infection) for it by Labcorp Western Blot ( 2 of 3 protiens # 23 and 39) and my CD57 was a very low 24. I then went to an LLMD in San Francisco who diagnosed me as having "neurolyme" and then also tested positive through him for Bartonella on IgM ( past infection) at IGenex Lab but no further Borrelia tests were performed as they were fine w the Labcorp positive results provided them, I then did many prescribed ABXs and other meds, probiotics, supplements, the full on Deanna Protocol, and Cowden for 3 1./2 mos along with on my own ( with LLMD ok) IV Ozone, Hyperbaric Oxygen, LDI, Ampcoil PEMF device and Lymph massages for drainage, I also tested positive in Nov/19 for some molds ( Och, A, Myc Acid, Enn. B) which I just got retested for last week and I was able to clear them all! So then in 12/19' I tested independently on CD57 w still very poor results of 30. So I decided to go off every single thing on 12/26/19 and onto another pretty rugged protocol of all heavy juicing and all raw organic fruits,veggies,nut, seeds diet w daily 30 min infrared saunas or hot hot tubs baths that put body temp by thermometer at 101-102. and an hr/day of sun here in Ca, for Vit D. So then my CD 57 went to 50 in about 2 mos of this and I await a test result from blood draw yesterday to see if its continued up. In meanwhile in preparation to do SOT ( a DNA sequencing to allegedly kill borrelia) I had lyme testing done at MDL Lab in N.J. per request of the Clinic in Georgia that does this SOT ( The Genesis Center). Well it came back CDC negative for Lyme and proteins 23 and 39 were at 32% and 42% respectively which is lower than the CDC 60% required as positive. So Im now even more anxious to see what CD57 comes in at now. I can tell you that my energy is still quite low and I am weakened, The thing I miss most about by commitment to the all natural diet and heat therapy is the Deanna Protocol products so I am likely to return to them very soon....I need some energy from that AAKG ! If Im not satisfied that Lyme is gone I kinda figure that Im detoxed as much as anyone can and I will likely to go back to Deanna Protocol and Cowden and perhaps even the ABXs....especially Ceftriaxone that I never took by IV but did take a similar oral version of called Ceftin ( along w 800mgs/day of Doxycylclne and 500mgs of Septra for bartonella). I will also try the SOT.
So my questions:
1, Do you think CD57 over 100 is sufficient to proceed to Stem Cells along w the MDL negative Lyme test or do you feel further Lyme testing would be best? Ive heard that the immunoblot at Igenex is a very good test for reliable borrelia results.
2. Do you still feel that Celltex is the best source of MSC Stem Cells?
3. is there anything different at all that you would do w Deanna in retrospect of all that youve learned?
4. Do you feel that neurolyme and ALS may well be one and the same?
Thank you Dr. Tedone , your feedback is really appreciated.
Sat, 18 Apr 2020 19:51:32 GMT
Dear Mark, The answer to question 1 is No. Question 2 is yes. It has been my experience over the past number of years that unless the bacterial infection is suppressed you will get better only to get worse.
Question 3. I would go on the pulsed antibiotic treatment as out lined on the web site.
Question 4 Yes
Sat, 18 Apr 2020 20:43:41 GMT
Thanks Dr. Tedone. To be clear on #1, no further testing needed, ie: over 100 on CD57 proceed to MSC Stem Cells?
Sun, 19 Apr 2020 03:04:06 GMT
A CD-57 done at lab corp over 100. But my index for Deanna was when she was on the pulse antibiotic treatment she no longer had Herxheimer reactions for the last 3 months.. Good luck
Thu, 23 Apr 2020 20:10:05 GMT
Thank you Dr Tedone. My Labcorp results just arrived and now their Western blot ( just like MDL Labs 2 weeks ago) shows no IgG or IgM borrelia infection. No Bartonella either. Disturbingly at the same time CD57 sunk back down to 28 just 4 pts higher than 8 mos ago. This is most frustrating as Id hoped to go to CellTex soon and before more function is loss. I still walk ( cant go more than 2 miles and could have walked over a 100 miles just a yr ago) and talk ok but my legs are getting so weakened and I have progressively less energy. 1. Are there any other diseases which you know of that might merit examining that have these type symptoms and where CD57 is lowered to this level? 2. Any suggestions on further testing?
Mon, 04 May 2020 03:13:12 GMT
Test at IGenex and start on the pulsed antibiotic treatment indicated on the web site. also find a Lyme literate doctor to treat you at https://www.ilads.org