On Sep 10, 11:55 pm, Susan <su...@nothanks.org> wrote:
> x-no-archive: yes
> truehawk wrote:
> > Would you believe cucumbers, cashews, and neem oil seem to help a good > > deal.
> Hey, add a few veggies and some quality proteins and you've got a diet > plan for good health! ;-)
> Have you had your IgE tested? Mine was unbelievably high decades ago > when my tick diseases were still undiagnosed and I was really ill and > inflamed all over.
> Susan
Substitute Dill Weed for the Neem oil, or some of it.
On Sep 10, 11:55 pm, Susan <su...@nothanks.org> wrote:
> x-no-archive: yes
> truehawk wrote:
> > Would you believe cucumbers, cashews, and neem oil seem to help a good > > deal.
> Hey, add a few veggies and some quality proteins and you've got a diet > plan for good health! ;-)
> Have you had your IgE tested? Mine was unbelievably high decades ago > when my tick diseases were still undiagnosed and I was really ill and > inflamed all over.
> Susan
Hi Sue. Yep that is my diet. BTW I could use a hand. I am pulling together the corporate taxes so I don't have a lot of time to spend looking for an doc right now. But I have looked in vain for an doc to test for ,and treat echinococcosis, short of going to Minnesota to the Mayo.
Know of a doc to handle this within 500 miles of Knoxville Tennessee?
> truehawk wrote: > > Hi Sue. Yep that is my diet. > > BTW I could use a hand. > > I am pulling together the corporate taxes so I don't have a lot of > > time to spend looking for an doc right now. > > But I have looked in vain for an doc to test for ,and treat > > echinococcosis, short of going to Minnesota to the Mayo.
> > Know of a doc to handle this within 500 miles of Knoxville Tennessee?
> IME and that of other tick borne disease, Cushing's, CFS patients, Mayo > is a waste of time. You're not sick, you don't have anything wrong with > you unless you meet exclusionary surveillance criteria, etc. I suspect > that if you visit the crazies at lymenet.org message boards, they'll > have a whole list of mostly quacks and some good docs who treat chronic > Lyme disease. Even if they are quacks, they'll typically test for what > you think you have, though very few of them are infectious diseases doctors.
> I'm not remembering why your PCP or anyone even at a walk in clinic > can't test you for this? How about an immunologist?
> I think Larry Klapow is very open to communications, I'll have to see if > I can dig up a current email addy for him and get back to you. If he > can't do it, he should be able to direct you.
My PCP, such as he is, I just got here, was willing, but then he was in shock. He wanted my to find a parasitologist ASAP, and the only parasitologists I can find are at the vet schools. In fact the guys in charge of Parasitology for the CDC are DVMs not MDs, (because worms are icky I guess) I fully expect that by the time that I get back to my PCP he will toe the "don't test" don't find line. Or maybe, after 9 years of this, I am just too cynical. They say that this stuff is rare, but they usually only detect this stuff when it shows up an x-ray, which is does only after the cysts begin to calcify. The have apparently done organ transplants where they later found out that they transplanted the organism along with the organ, and you know that organs that are used for transplant are imaged six ways from Sunday and the serology is inspected 7 ways, so weather it is rare or just never looked for is a question. Now the stuff from my nose contains clear round things that have a characteristic three way tear in the middle when they dry. So that there is a three pointed star or" T" that light shines through when lit from below. Those turn out to be the eggs, so anyone like a vet, who knows what they look like would have identified them.
The serology is only positive 50% of the time, but they can get samples like figure D from me at any time, so it would be pretty nice to find someone who KNOWS what to look for that will look directly at the material.
> On Sep 11, 6:17 pm, Susan <su...@nothanks.org> wrote:
> > x-no-archive: yes
> > truehawk wrote: > > > Hi Sue. Yep that is my diet. > > > BTW I could use a hand. > > > I am pulling together the corporate taxes so I don't have a lot of > > > time to spend looking for an doc right now. > > > But I have looked in vain for an doc to test for ,and treat > > > echinococcosis, short of going to Minnesota to the Mayo.
> > > Know of a doc to handle this within 500 miles of Knoxville Tennessee?
> > IME and that of other tick borne disease, Cushing's, CFS patients, Mayo > > is a waste of time. You're not sick, you don't have anything wrong with > > you unless you meet exclusionary surveillance criteria, etc. I suspect > > that if you visit the crazies at lymenet.org message boards, they'll > > have a whole list of mostly quacks and some good docs who treat chronic > > Lyme disease. Even if they are quacks, they'll typically test for what > > you think you have, though very few of them are infectious diseases doctors.
> > I'm not remembering why your PCP or anyone even at a walk in clinic > > can't test you for this? How about an immunologist?
> > I think Larry Klapow is very open to communications, I'll have to see if > > I can dig up a current email addy for him and get back to you. If he > > can't do it, he should be able to direct you.
> My PCP, such as he is, I just got here, was willing, but then he was > in shock. > He wanted my to find a parasitologist ASAP, and the only > parasitologists I can find are at the vet schools. > In fact the guys in charge of Parasitology for the CDC are DVMs not > MDs, (because worms are icky I guess) > I fully expect that by the time that I get back to my PCP he will toe > the "don't test" don't find line. Or maybe, > after 9 years of this, I am just too cynical. > They say that this stuff is rare, but they usually only detect this > stuff when it shows up an x-ray, which is does only after the cysts > begin to calcify. > The have apparently done organ transplants where they later found out > that they transplanted the organism along with the > organ, and you know that organs that are used for transplant are > imaged six ways from Sunday and the serology is inspected 7 ways, so > weather it is rare or just never looked for is a question. Now the > stuff from my nose contains clear round things that have a > characteristic three way tear > in the middle when they dry. So that there is a three pointed star or" > T" that light shines through when lit from below. Those turn out to be > the eggs, so anyone > like a vet, who knows what they look like would have identified them.
> The serology is only positive 50% of the time, but they can get > samples like figure D from me at any time, so it would be pretty nice > to > find someone who KNOWS what to look for that will look directly at the > material.
I am a good deal better. The stuff goo is not gone, but it is greatly reduced, and no longer forms 9 inch long strings when I try to spit it out. Adding 4 table spoons of dill weed a day to the oral albendazole and the neem oil on the head has helped enormously
I showered off this morning and felt pretty good except that it still burns a bit in my chest when I swallow. Then I put the neem oil back on the areas that had been raised at the crown of my head, and after a minute I began to feel a bit dizzy and nausaus again. Again the sensation of having something hanging from the underside of my scull just in front of the right-hand crown on my head. The colony or whatever did half hour of contractions, which feels like someone moving a hand that is stuck to my head with contact cement. Bitter compounds like the prazquinal and neem make it pull up into a defensive ball, so I am also using a couple of packets of splenda to bait it down.
> truehawk wrote: > > I am a good deal better. The stuff goo is not gone, but it is greatly > > reduced, and no longer forms 9 inch long strings when I try to spit it > > out. > > Adding 4 table spoons of dill weed a day to the oral albendazole and > > the neem oil on the head has helped enormously
> > I showered off this morning and felt pretty good except that it still > > burns a bit in my chest when I swallow. > > Then I put the neem oil back on the areas that had been raised at the > > crown of my head, and after > > a minute I began to feel a bit dizzy and nausaus again.
> Is NEEM oil rich in salicylates? I get weak and dizzy from topicals or > cosmetics rich in them or lactic acid.
> > Again the sensation of having something hanging from the underside of > > my scull just in front of the right-hand crown on my head. > > The colony or whatever did half hour of contractions, which feels like > > someone moving a hand that is stuck to my head with contact cement. > > Bitter compounds like the prazquinal and neem make it pull up into a > > defensive ball, so I am also using a couple of packets of splenda to > > bait it down.
> Elizabeth, if you're not taking a high weekly dose of vit D3, > cholecalciferol, you maybe should consider it. Couldn't hurt to test > your 25(OH)D first, though. Most PCPs know they should be doing this > for all their patients now, so shouldn't be hard to get. You want it > WELL OVER 32.
> Susan
Susan
I tried the high doses of D3 for a while last year. It did not really make much difference.
What I have learned this week is that this class of critter causes pernicious anemia. People with it read as being low in vitiman B12, because of the "demands of the parasite'. Now how that happens, I havn't figured out. Can you? Anyway, I got a some chewable B12 and have been taking it carefully. I want to energize me, not the worm, so I have been taking it only when I take my medicine, thinking that the worm's enthusiam of the Vitiman B12 might overcome it's tendency to put an diffusion barrier between itself and bitter wormicideal agents.
Tonight I put a mixture of clove oil, cinnimon oil, peppermint oil, camphor oil. and neem oil on my scalp. This turns out to be a much less painful operation than with the neem oil alone, and it smells infinitely better.
And I am going to use some papaya enzyme again to thin the goo. I have been chewing the P again for the last couple of days and note that my tummy is much happier.
Taxes done now. I am going to start looking up Bell.
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