Re: Re: Another Doctor Referral Request ( B, Lyme disease)

[Guest guest]

Thanks, . I think the main thing right now is to find

a doc who can run all of the tox blood screens possible. Do you think

Smart would be good for that? Do you know anything about Constantine

Kotsanis? Looks like he does a lot of good for adults and kids, but could

be very expensive.

RE the rash…it is not a bunch of little bumps. It is

a few big circles almost like ringworm, but not. Very strange it comes

and goes and seems to pop up when he’s stressed. I don’t

think it itches or is uncomfortable. He did get bitten by a tick when he lived

in DC years ago, so lyme is possible, but who knows… The biggest

question right now is still why he is losing protein from his muscles and getting

progressively weaker and feeling worse.

I don’t know if he will ever do the Enterolab. He

just had an upper GI to have his esophagus stretched and the doc took a few

biopsies. I know those can be falsely negative, but if they do come back

negative I doubt he will consider that gluten is a problem for him.

Hope the feast was great this weekend! I was so bummed to

miss it. We didn’t get out of downtown until almost noon after the

parade.

Best,

Grace

From:

Texas_Thyroid_Groups [mailto:Texas_Thyroid_Groups ]

On Behalf Of mhbarnes_99

Sent: Monday, December 08, 2008 8:30 AM

To: Texas_Thyroid_Groups

Subject: Re: Another Doctor Referral Request

( B, Lyme disease)

I think I just inadvertently posted a blank

message - I haven't had

my tea yet!

There is one functional medicine doctor that I know that has an

inkling of an idea about Lyme and he does lots of detox stuff -

Idemudia Smart in ville. BUT, he knows nothing about Thyroid

nor Celiac. And, your husband's rash sounds a whole lot more like

Dermatitis herpetiformis (DH) than it does Lyme - my son had that

and will still get that reaction when he inadvertently consumes

gluten. And, of course, enterolab is the best test for that.

[Guest guest]

Please do make a Lyme folder, including the recommended support group site.

Subject: Re: Another Doctor Referral Request ( B, Lyme disease)To: Texas_Thyroid_Groups Date: Monday, December 8, 2008, 8:30 AMI think I just inadvertently posted a blank message - I haven't had my tea yet!

There is one functional medicine doctor that I know that has an inkling of an idea about Lyme and he does lots of detox stuff - Idemudia Smart in ville. BUT, he knows nothing about Thyroid nor Celiac. And, your husband's rash sounds a whole lot more like Dermatitis herpetiformis (DH) than it does Lyme - my son had that and will still get that reaction when he inadvertently consumes gluten. And, of course, enterolab is the best test for that. The Lyme rash isn't particularly irritating - the only time I ever even noticed it (other than visual) was when I was on abx I was having die off reactions as there is obviously a concentration of bacteria and toxins near the site of the bite. Also, Lyme rash typically will only reappear if you are aggressively treating. Per my note on the TMB, there isn't a single Lyme literate physician in Texas - there might be some that claim such (alot of alternative docs), BUT the depth of knowledge required is about 10 fold of what one needs from a good thyroid doc (and we know the problems in finding a good thyroid doc). Overall, Lyme is entirely a clinical diagnosis. The tests are all far from accurate - in particular ANY that are done through main labs as they're testing for a lyme bacteria from Europe rather than any that is prevalent in the U.S. The only reason I got a positive test was because I was tested at the optimal time - 7 weeks post tick bite. A local supposed Lyme literate doc uses Igenex. You can order a test kit from them to take to your local doctor, but it's very expensive ($500+) and is not covered by insurance. The tests for past Lyme are by far the most inaccurate. There are some that look for DNA in the urine. But, the reality is that a high percentage (majority) of the population has been exposed to Lyme. It only causes problems in a much smaller percentage - again the gene connection and it's typically not the bacterial infection, but the toxins that contributes to the majority of symptoms. That all said, the judicious use of abx can be helpful, but dosing is extremely tricky as is length of treatment. And, back to thyroid, the majority of Lyme patients are low thyroid. Based on my experiences, it's actually the hypothyroidism that causes many of us to get so ill with just about any infection we're exposed to. The good Lyme doctors will go through a thorough process of evaluating for other far more common conditions, such as low thyroid and celiac. That's not to say one can't also have Lyme, but my experience (and that of alot of Lyme doctors) is that if you don't get the thyroid properly treated or remove the gluten, then you will not recover from Lyme no matter how much abx you dump in your body. I've seen this time and time again with folks (and experienced it myself) in our local Lyme support group and among the many I've met at Lyme conferences (in DC area). Obviously, the concentration of best Lyme doctors is on the East coast. Dr. Shoemaker (the biotoxin doc) knows Lyme (he's had it 3x himself) and will do some testing for it, but again, he knows it's a clinical diagnosis. In my opinion, you'd be wasting a whole lot of $s using a local doctor. Note, I will add some files and links to the website if it's okay with Jan on Lyme - including info about DFW Lyme support group - although I have some words of caution about them since most refuse to consider that alot of their symptoms are low thyroid or based on lifestyle, etc.) There are some exceptional treatment guidelines that any good Lyme doc will follow - and again, I don't think you can find a single doc in Tx that would follow them properly - some will piecemeal. Also, Lyme folks are reluctant to share in print or openly their local Lyme doctor that might be able to help them due to TMB, so someone from the group can contact you offline. B