Carnes - update on progress

[Guest guest]

a:

You wrote:

" Also, Shoemaker encouraged me to go back to a high protein/fatter diet aka low

carb since I am probably burning protein and storing fat like crazy "

Did Shoemaker say why this happens, or do you know? Right after I became ill 4

years ago, fat started accumulating under my skin rapidly in places I've never

had it before.

Does anyone know why this happens?

Thanks,

Carnes - update on progress

Update on my progress:

I am not sure what the new government regs on privacy and medical records do

for us except make it difficult to get records. This is most annoying when you

see four different doctors.

I felt it might be useful for some to see what is going on in my medical

records. I will retain the right to keep private what I wish. <grin> For

instance no one gets to know my weight or age. If you skim down to the bullets

you will find some issues in my case which might be fun to argue over - better

known as debate.

My history is mild symptoms of Lyme since 1972, followed by undiagnosable

arthritis, then Hashimoto's, and chronic fatigue syndrome with flulike onset in

1995. By 1996 I had a positive PCR for mycoplasma incognitus and was treated

with antibiotics for about 5 years. Most of this was Zithromax at 500 mg a day.

Within the first two years I recovered to about 80% function but relapsed within

3 months off antibiotics. I started taking growth horomone for adult growth

horomone deficiency in 1999. One year ago I was diagnosed with borrelia,

possible babesia and was treated with 8 months of multiple antibiotics including

Mepron and quinolones. At the same time I was taking Zadaxin, a thymus hormone

immune modulator.

Currently I feel that my Lyme/mycoplasma symptoms have resolved in the sense

that I have no signs of infection and no brain confusion. I still have minor

joint pain, cannot do aerobic exercise and seem to have permanent damage to the

hypothalamus and thyroid. I also now have indications that I react to certain

toxic mold buildings but seem able to recover in a few hours if I get out.

At this point it made sense to me to be evaluated and treated by Dr. Ritchie

Shoemaker. I did not go to see him a year ago, as I felt that he does not treat

Lyme as aggressively as needed to eliminate or control the actual infection. I

know he will disagree with me on this point. I do presently seem to have tendon

damage from 2 months of quinolones. So perhaps if I had seen Shoemaker first I

would have avoided that.

The good news is that the Questran I have been on 4 weeks does seem to be

helping relieve the tendon pain. Only more time and more yucky yellow mixture

will tell. I have had no problem taking Questran, but I think that is mental

attitude. I will deal with anything that might get me well.

Okay here are the details in no particular order:

a.. Methacillin resistant coagulase negative staph epidermis COLONIZATION

not infection I have it. My husband has it. His is more resistant than mine. Na,

na. Will we treat it? Yes, at the end of 30 days on Questran. Since staphage

lysate is not available we will treat it with 3 antibiotics at the same time,

each one from a family to which our staph is not resistant.

b.. Actos and me did not relate. I started retaining fluids, swollen ankles,

weight up not down, and elevated lier enzymes which are now going down and

weren't up much anyway. I did not cheat on the diet, honest, but I just couldn't

tolerate the Actos. I don't want to ruin Shoemaker's record and be the first to

have major liver problems, so we agreed I should stop it. I seem to be the rare

case that cannot take Actos. Too bad, cause I sure was hoping to lose weight on

it. Oh well. I'm having salmon for supper and added fish oil capsules to my

vitamins. This won't help Shoemaker's data but will help me, and this was his

recommendation.

c.. Melanocyte stimulating hormone - geez, I don't have any. Why am I not

surprised? I don't have any growth horomone either. Well, levels that are normal

for someone 80 years old, and, no, I am not 80. There is no synthetic MSH or

products to increase it yet so I will continue to follow this research hoping

for a treatment eventually. When I knock out the staph colonization the MSH

levels may go up, but I will not be holding my breath, which leads me to

d.. Pulmonary stress test = I can't even walk up a flight of stairs. But I

have good days when I can, and if I can get my tendons better I think I can do

some exercise. Also, Shoemaker encouraged me to go back to a high protein/fatter

diet aka low carb since I am probably burning protein and storing fat like

crazy.

e.. The tendons do seem somewhat better. No one knows, but maybe the

Questran helps that.

f.. Visual accuity test - clearly the Questran is clearing up my vision, and

I even have cataracts. The scores are quite a bit better. This really looks

good. Toxins are moving OUT.

g.. MMP 9 levels were on the high side. Shoemaker felt that the Actos

probably had already lowered them. This makes me worry, have to worry some, that

the tendon pain is returning without the Actos. Reminds me of the Lyme and the

Levaquin - can't win for losing.

h.. Lyme tests - speaking of Lyme - here is a real hot issue. Shoemaker had

a western blot run on me at Esoterix. Their results absolutely do not match

IgeneX. I am not happy about this. Esoterix - positive on 18 and 34. IgeneX

positive on 23-25 and 31, equivocal on 34, negative on 18 and equivocal on a

couple others. And then there was the positive urine sample at IgeneX. So we can

all fight with Dr. Shoe now. Let's argue over whether Igenex or Esoterix is more

accurate. Is there such a thing as an equivocal band on an IgG western blot? Are

we overdiagnosing Lyme disease? Do I have Lyme disease based on these labs?

Esoterix would say, " No, girl. " (Hey, I know the clinical diagnosis is bull's

eye rash and joint pains. But that is not what I am talking about here. I am

talking about LABS)

If you are still reading, I am sorry I haven't solved the problems of the cfs,

mold, Lyme world. But maybe I have shared something that will fit your case, or

several of your patient cases. If all I have done is write out a couple of

Shoemaker's abbreviations I will have done the world a service.

Thanks, Dr. Shoemaker, for all you are doing.

a Carnes

[Guest guest]

Update on my progress:

I am not sure what the new government regs on privacy and medical records do for us except make it difficult to get records. This is most annoying when you see four different doctors.

I felt it might be useful for some to see what is going on in my medical records. I will retain the right to keep private what I wish. <grin> For instance no one gets to know my weight or age. If you skim down to the bullets you will find some issues in my case which might be fun to argue over - better known as debate.

My history is mild symptoms of Lyme since 1972, followed by undiagnosable arthritis, then Hashimoto's, and chronic fatigue syndrome with flulike onset in 1995. By 1996 I had a positive PCR for mycoplasma incognitus and was treated with antibiotics for about 5 years. Most of this was Zithromax at 500 mg a day. Within the first two years I recovered to about 80% function but relapsed within 3 months off antibiotics. I started taking growth horomone for adult growth horomone deficiency in 1999. One year ago I was diagnosed with borrelia, possible babesia and was treated with 8 months of multiple antibiotics including Mepron and quinolones. At the same time I was taking Zadaxin, a thymus hormone immune modulator.

Currently I feel that my Lyme/mycoplasma symptoms have resolved in the sense that I have no signs of infection and no brain confusion. I still have minor joint pain, cannot do aerobic exercise and seem to have permanent damage to the hypothalamus and thyroid. I also now have indications that I react to certain toxic mold buildings but seem able to recover in a few hours if I get out.

At this point it made sense to me to be evaluated and treated by Dr. Ritchie Shoemaker. I did not go to see him a year ago, as I felt that he does not treat Lyme as aggressively as needed to eliminate or control the actual infection. I know he will disagree with me on this point. I do presently seem to have tendon damage from 2 months of quinolones. So perhaps if I had seen Shoemaker first I would have avoided that.

The good news is that the Questran I have been on 4 weeks does seem to be helping relieve the tendon pain. Only more time and more yucky yellow mixture will tell. I have had no problem taking Questran, but I think that is mental attitude. I will deal with anything that might get me well.

Okay here are the details in no particular order:

Methacillin resistant coagulase negative staph epidermis COLONIZATION not infection I have it. My husband has it. His is more resistant than mine. Na, na. Will we treat it? Yes, at the end of 30 days on Questran. Since staphage lysate is not available we will treat it with 3 antibiotics at the same time, each one from a family to which our staph is not resistant.

Actos and me did not relate. I started retaining fluids, swollen ankles, weight up not down, and elevated lier enzymes which are now going down and weren't up much anyway. I did not cheat on the diet, honest, but I just couldn't tolerate the Actos. I don't want to ruin Shoemaker's record and be the first to have major liver problems, so we agreed I should stop it. I seem to be the rare case that cannot take Actos. Too bad, cause I sure was hoping to lose weight on it. Oh well. I'm having salmon for supper and added fish oil capsules to my vitamins. This won't help Shoemaker's data but will help me, and this was his recommendation.

Melanocyte stimulating hormone - geez, I don't have any. Why am I not surprised? I don't have any growth horomone either. Well, levels that are normal for someone 80 years old, and, no, I am not 80. There is no synthetic MSH or products to increase it yet so I will continue to follow this research hoping for a treatment eventually. When I knock out the staph colonization the MSH levels may go up, but I will not be holding my breath, which leads me to

Pulmonary stress test = I can't even walk up a flight of stairs. But I have good days when I can, and if I can get my tendons better I think I can do some exercise. Also, Shoemaker encouraged me to go back to a high protein/fatter diet aka low carb since I am probably burning protein and storing fat like crazy.

The tendons do seem somewhat better. No one knows, but maybe the Questran helps that.

Visual accuity test - clearly the Questran is clearing up my vision, and I even have cataracts. The scores are quite a bit better. This really looks good. Toxins are moving OUT.

MMP 9 levels were on the high side. Shoemaker felt that the Actos probably had already lowered them. This makes me worry, have to worry some, that the tendon pain is returning without the Actos. Reminds me of the Lyme and the Levaquin - can't win for losing.

Lyme tests - speaking of Lyme - here is a real hot issue. Shoemaker had a western blot run on me at Esoterix. Their results absolutely do not match IgeneX. I am not happy about this. Esoterix - positive on 18 and 34. IgeneX positive on 23-25 and 31, equivocal on 34, negative on 18 and equivocal on a couple others. And then there was the positive urine sample at IgeneX. So we can all fight with Dr. Shoe now. Let's argue over whether Igenex or Esoterix is more accurate. Is there such a thing as an equivocal band on an IgG western blot? Are we overdiagnosing Lyme disease? Do I have Lyme disease based on these labs? Esoterix would say, "No, girl." (Hey, I know the clinical diagnosis is bull's eye rash and joint pains. But that is not what I am talking about here. I am talking about LABS)

If you are still reading, I am sorry I haven't solved the problems of the cfs, mold, Lyme world. But maybe I have shared something that will fit your case, or several of your patient cases. If all I have done is write out a couple of Shoemaker's abbreviations I will have done the world a service.

Thanks, Dr. Shoemaker, for all you are doing.

a Carnes