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Med update for Lyme folks


BlsdMama
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BlsdMama,

 

That wee baby is so delicious!

 

By: I feel that MND is less likely all the time

Do you mean: You are feeling pretty strongly that a Lyme diagnosis is the correct path?

 

This is a long journey! Prayers for your complete health and healing. And as you continue waiting...

 

-Rebecca

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Congrats on the baby, and what a beautiful auntie!

 

Your update on Lyme made me tear up. Hugs and support to you!

 

I remember my first four hour visit with my beloved LLMD. It was intense. And the relief and fear that the diagnosis brought... oh my.

 

What does she have in mind for you while waiting on Igenex? Are you testing for a gazillion things? I remember having to split the blood draws. We did 27 vials one day, and 30 a week later. Gaaah! The info gleaned was overwhelming.

 

I did 5 months of IV, but the majority of my treatment was oral. If you need anything, don't hesitate to reach out. Lymenet was instrumental there for me, in answering questions and listening to me whine about the herxing. Ugh. I have not posted there in years, but I do think I went back and updated when finally mostly well - my whole sordid story is there. :) My name there is cactus, if you head over there at some point.

 

So, so glad you had a visit with the LLMD and in high hopes for you that you are now on the right path.

 

FWIW, my MS diagnosis was bogus. And the symptoms I had that seem to match the ones you have posted about are all gone. It took a long time, and it was a hard road, but worth it.

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Congrats on the baby, and what a beautiful auntie!

 

Your update on Lyme made me tear up. Hugs and support to you!

 

I remember my first four hour visit with my beloved LLMD. It was intense. And the relief and fear that the diagnosis brought... oh my.

 

What does she have in mind for you while waiting on Igenex? Are you testing for a gazillion things? I remember having to split the blood draws. We did 27 vials one day, and 30 a week later. Gaaah! The info gleaned was overwhelming.

 

I did 5 months of IV, but the majority of my treatment was oral. If you need anything, don't hesitate to reach out. Lymenet was instrumental there for me, in answering questions and listening to me whine about the herxing. Ugh. I have not posted there in years, but I do think I went back and updated when finally mostly well - my whole sordid story is there. :) My name there is cactus, if you head over there at some point.

 

So, so glad you had a visit with the LLMD and in high hopes for you that you are now on the right path.

 

FWIW, my MS diagnosis was bogus. And the symptoms I had that seem to match the ones you have posted about are all gone. It took a long time, and it was a hard road, but worth it.

 

 

So she really wants me to focus on diet, rest, and supplements currently just to get my immune system read for the onslaught.  It is an anti-histamine diet?  I have no idea but it is the most restrictive thing I have EVER seen.  

 

Wah, right?   I will totally deal.

 

So really the plan is just - test back, kill the Lyme.

 

:D

 

I am really hoping it is essentially just that.  I am probably still pretty naive. 

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So she really wants me to focus on diet, rest, and supplements currently just to get my immune system read for the onslaught. It is an anti-histamine diet? I have no idea but it is the most restrictive thing I have EVER seen.

 

Wah, right? I will totally deal.

 

So really the plan is just - test back, kill the Lyme.

 

:D

 

I am really hoping it is essentially just that. I am probably still pretty naive.

Which diet does she want you on? It may change through treatment. I have landed on a keto diet, but did others through treatment. She'll probably tailor it to you. You can do this! It's worth it. When you do start to treat - hydrate. All the time. There's a tendency to get dehydrated and it will make all your symptoms worse. Ugh.

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Congrats on the baby, and what a beautiful auntie!

 

Your update on Lyme made me tear up. Hugs and support to you!

 

I remember my first four hour visit with my beloved LLMD. It was intense. And the relief and fear that the diagnosis brought... oh my.

 

What does she have in mind for you while waiting on Igenex? Are you testing for a gazillion things? I remember having to split the blood draws. We did 27 vials one day, and 30 a week later. Gaaah! The info gleaned was overwhelming.

 

I did 5 months of IV, but the majority of my treatment was oral. If you need anything, don't hesitate to reach out. Lymenet was instrumental there for me, in answering questions and listening to me whine about the herxing. Ugh. I have not posted there in years, but I do think I went back and updated when finally mostly well - my whole sordid story is there. :) My name there is cactus, if you head over there at some point.

 

So, so glad you had a visit with the LLMD and in high hopes for you that you are now on the right path.

 

FWIW, my MS diagnosis was bogus. And the symptoms I had that seem to match the ones you have posted about are all gone. It took a long time, and it was a hard road, but worth it.

 

 

What is up with Lyme being wrongly diagnosed as MS?    That happened to a former coworker friend of mine.  There is a Lyme test.  She had thought for years that she had MS and made life-altering decisions based on it.  

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What is up with Lyme being wrongly diagnosed as MS? That happened to a former coworker friend of mine. There is a Lyme test. She had thought for years that she had MS and made life-altering decisions based on it.

That's what happened to me. We were even in the midst of selling our home, because I was heading into a wheelchair fast and couldn't navigate our house. My DH spent a year carrying me up and down the stairs.

 

The Lyme tests available are not very reliable, and there is confusion about how tests should be run (most docs run the less sensitive test first, then the more sensitive test to "confirm" - that makes no sense as the first test has too many false negatives). Even the more sensitive test is not terribly reliable. There is a long, complicated and political reason for this that involves patents and shady practices wrt that old Lyme vaccine that used to be on the market and is no longer, as a result of too many recipients coming down with Lyme. There is also the fact that Lyme is a clinical diagnosis but many docs are confused because they are required to report certain results on a western blot. Many think that if the results are such that they don't need to be reported, the test is "negative" - that's actually not the case. Just because a test is not required to be reported to the CDC does not mean it's negative - again, this is part of that complicated situation re: patents.

 

It's all a mess, really, and has literally destroyed lives. There's a documentary on Netflix - Under Our Skin - that explains a lot. They do a pretty good job.

 

The best Lyme tests are at Igenex. A few other labs do specialty testing for other organisms that are hard to find. Fry Labs in AZ is one. But Quest and Labcorp ... notorious for missing things. They don't even run the tests for all of the bands, so they really don't get enough data.

 

OP, I'm just over the moon happy that you found an LLMD. I hope it makes all the difference for you!

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What is up with Lyme being wrongly diagnosed as MS?    That happened to a former coworker friend of mine.  There is a Lyme test.  She had thought for years that she had MS and made life-altering decisions based on it.  

 

Ditto what Spryte said.  Dh was diagnosed with MS decades ago after a Lyme test came back "negative".  His decline was very slow, partially thanks to his aggressive self-treatment with nutrition -- he was constantly figuring out how to optimize his immune system.

 

Lo and behold, after decades, Igenex and a different doctor figured out why his MS didn't follow a typical path (eg, his reactions to heat and cold, his reactions to immune boosting treatments) -- it had been Lyme and co-infections rather than MS.

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Low histamine diets are indeed very restrictive but they will definitely help in the short term and are unlikely to be a lifelong thing except for maybe a few food triggers.

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