The Lyme Disease Thread

[Rpm999]

oh okay...ah well hopefully some alternative testing will see what effect lyme is having on my body if i have it....question though, is herxing something really bad? i hope it isn't something terrifying/scary, because that must be hard with how sick you already are

[dlp252]

oh okay...ah well hopefully some alternative testing will see what effect lyme is having on my body if i have it....question though, is herxing something really bad? i hope it isn't something terrifying/scary, because that must be hard with how sick you already are

Herxing is the body's way of reacting to the amount of toxins and bugs that are being killed off. It can make some people feel pretty bad, but it doesn't always have to, and there are some things that can make the effect a little less severe (sometimes). I haven't had a severe herx in a long time, and that's mainly because I haven't started any agressive treatments for any of my issues. The last time I had one, it felt like I had the flu. Different people may have different symptoms.

[Rpm999]

yeah i think i have a lot going on so i'm not rushing into anything either, better to start slow and address some of the smaller, impacting things before treating the big one...i think that's the mistake people make, but i mean nobody has severe herxes too? i don't even mean flu symptoms or extreme fatique, i think it would be terrifying if people had seizures or panic attacks, but i doubt that...or hope not, i'd die ....guess taking it slow effects that too

[CarlaB]

My herxes were bad in the beginning, but it was a worsening of symptoms I already had ... I was already really sick, so the herx on top of it put me in pretty bad shape.

[CarlaB]

There's Lyme chat every Saturday night at 8PM EST (actually every night) at Open Original Shared Link. Hope to see some of you there.

It goes on for hours, so if you can't get there till later, that's fine.

[MrsMH]

Wow, it is great to see others with similar problems my Dad is having...He has had Lymes since the 70's (northern Californian mountains hippie)... Never had a positive test yet. All the symptoms you can name, including gluten intolerance (Severe villi damage, Dr said it was the worst he'd ever seen). He weighs about 140 lbs (6'2"tall) & eats constantly. The brain fog is terrible. And the pain. Nothing they give him works. Nobody seems to know what to do with him. He is now showing Parkinsons symptoms Iincreasing rapidly). He looks like a zombie, walks so slow and robot-like, finding it hard to keep his balance too. I think he has finally found a good Lymes Dr. I hope so. We are terrified! Lymes is a real epidemic in Mendocino County (and many other places too , I'm sure)

My son (7) has now been diagnosed celiac, and probably has other intolerances...

Life is challenging !

[CarlaB]

Welcome! There are very good Lyme docs in CA. If you want to check up on your dad's try seeking doctors at www.Lame Advertisement. People there know all the good docs.

Yes, he can get better! With villi damage, he truly has celiac disease, so should also be gluten-free. Having both Lyme and celiac disease would be tough.

[dlp252]

Hello and welcome MrsMH!

[truthsearcher]

Welcome Mrs.MH

I just wanted to say I went to my first lyme support meeting about 20 min. from my home. It was so great. I got to meet several people and two of them see Dr. H and say he is the very best.

I will be trying to make an apt tomorrow. They did tell me that sometimes Dr. H tells people calling he is not accepting new pts. Ohhh I hope I can get in and my kids too if need be. I really don't want to go to anyone else.

Take Care

[CarlaB]

Yes, technically "he" does not accept new patients ... you have to see a PA.

I wish there were a support group around here!

Lymechat is fun though ... every night at 8PM EST .... I try to stop in for at least a little while ... I know some are there for hours.

[dlp252]

I will be trying to make an apt tomorrow. They did tell me that sometimes Dr. H tells people calling he is not accepting new pts. Ohhh I hope I can get in and my kids too if need be. I really don't want to go to anyone else.

Oh I hope you can get in!

[truthsearcher]

Yea!!!! I got in to see Dr. H Feb.19th. I will see the PA, and Dr. H pops in for part of the visit.

He does not treat young children, so..... looks like I will probably try to get in and see Dr. J in Conn. if we can afford it.

Today my 6yo dd had sereve pain in the webbing of her finger for no reason, esp inbetween her thumb and forefinger, it was very odd. It took several hours to calm down and even now she says she can't sleep it hurts too much.

I've lived with pain for so long, it kills me to see the children suffer so.

Yes Carla we have a wonderful Lyme support group here. We even had a veternarian come in and talk about what she's been seeing in the dog population..... It was so shocking...... She said the lyme has dramatically increased in the dogs she sees in the last few years. She says she knows these dogs have not even gone out of their back yards and are coming in with s/s ie diarhea is the first sign. Their bloodwork is showing lyme. She just came in to get the "human" aspect of lyme. She went away learning alot about us and we learned alot from her.

There's a handful of people who are on lymenet as well and it was so refreshing to "rub shoulders with other lymies.

[CarlaB]

YAY! Which PA? L. or J.?

I hope dd's fingers feels better soon.

[truthsearcher]

Carla,

They didn't say who I'd have for the PA.

It'll be about a 6 hour drive for us, so we'll spend the night in a hotel the night before for the next day early apt.

btw, dd is asleep now thank God! We'll see how she is tomorrow. Seems like everyday it's "something new".

My mind is getting worse. I broke down and cryed tonight cuz I couldn't understand my 8yo's school work. I'm so ready to get rid of this lyme brain.

[CarlaB]

Oh, I've been there ... both the crying and the schoolwork.

I stay at the Holiday Inn Express in Poughkeepsie. There is also The Roosevelt in Hyde Park. There's a nice bed and breakfast if you want to spend a little more money .... we stayed there the first time because we didn't know where we were going, so didn't know what other towns were nearby. The ladies even had gluten-free waffles for me.

[dlp252]

Yay...glad you were able to get in Laurie!!!

I've had that pain in the webbing, and in the same location before. Fortunately it hasn't happened in a long time now.

[AndreaB]

Good news about the appointment Laurie!

[Jestgar]

Open Original Shared Link

NEJM reply to an article: Open Original Shared Link

[CarlaB]

Jestgar, that is exactly what we're up against ... that particular group of physicians that consistently ignore the thousands (to the tune of 19,000) articles that show there is such a thing as chronic Lyme Disease. These guys infuriate me.

It's their working together to attempt to prove there is no chronic Lyme Disease and ignoring any evidence given by anyone outside their group that has the Connecticut attorney general filing anti-trust suits against them.

And to think these guys claim to be scientists.

On the other hand, anyone seeking Lyme treatment should know about the debate over Lyme. LLMD's will have you sign a statement saying you know about it and have elected to have long term abx therapy.

This is from www.ilads.org, basic information.

There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the US and European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed.

My personal experience is that I still was bedridden by this disease 30 days into treatment. One YEAR later, I'm 100% functional .... though still suffer from some fatigue and insomnia ... I'm also still in treatment, though we are winding up and doing things at this point to build my immune system to prevent relapse.

It's amazing that doctors are even more clueless about Lyme Disease than they are about celiac disease.

[CarlaB]

Here's a good article explaining the debate.

This hits debate hits a nerve with me because I got a Somatization Disorder diagnosis even in the face of a CDC positive Lyme test.

[Rpm999]

^that's really sad to happen, unbelievable if you ask me...but hey it's like anything, lots of people are uneducated about crucial things in life

[CarlaB]

Another NEJM article.

Open Original Shared Link

[truthsearcher]

Hi everyone. It's taken a few extra days to get these results because all the kids had fevers in the 103 range sence Sunday, so I just haven't been able to get out of the house.

Both tests were CDC and IgeneX negative. You have to have 2 or more doubled starred bands present to be positive through IGeneX and 5 specific bands to be CDC positive.

kid#1

IGG

18 -

22 -

**23-25 -

28 -

30 +

**31 -

**34 -

**39 -

**41 ++

45 +

58 +

66 -

73 -

**83-93 -

IGM

All was negative.

kid #2

IGG

All negative except band 41 which was a double ++.

IGM

All negative except band 41 was a INDETERMINATE

A couple things to note is....

I as their momma was ++ on both IGM and IGG on the 41 band.

KId number 2 has more physical symptoms ie tummy aches, migrating pain in scalp, legs.

Kid number 1 has more cognitive issues ie stuttering, stammering, ADD type issues.

For reference here is mine.

IGG

18 -

22 -

**23-25 IND

28 -

30 -

**31 ++

**34 -

**39 IND

**41 ++

45 -

58 -

66 +

73 -

**83-93 +

IGG

18-

22-

**23-25 -

28 -

30 -

**31 IND

**34 IND

**41 ++

45 -

58 +

66 -

73 -

**83-93 -

Comments welcome. I realize the LLMD will have to make a diagnosis based on clinic symptoms as well as looking at the positive bands. We haven't decided what to do yet. We will probably wait as see how my appt. goes first then make a wise decision based on my outcome.

Laurie

[CarlaB]

Band 30 is highly specific for Lyme Disease, so I think an LLMD will probably look at that as a positive test. I think 58 is specific, too, but I can't remember off the top of my head.

[scotty]

hello everyone,

i figure to drop in and at least introduce myself to The Lyme Thread as i will be pursuing this avenue for what the @$*% is bothering me all the time. i was really bad there about week-week and 1/2 ago to the point i cried for help and CarlaB had a long afternoon discussion with me suggesting that i check into Lyme. i am not going to go into my whole story on this post as i am working and quite fatigued since these episodes that have arose out of nowhere after i was going quite well towards 100% on just a gluten free diet. something got me and again and again and again and i have had D since i started gluten-free (April '07). though incredible turns have been made in my system and i am much better with the D today then the D of years prior...i still think something is not fully right. i am very limited on foods. Caulflower, fish, and ground beef (which i cannot tell most times, but thats what brings me here....)

seems as though there is still some issue holding me back and i have multiple troubles with multiple foods and no matter what i try i can't get it right. everytime i get really messed up i end realizing a strong food needs to be cut, but am running out of things to cut. i had major strides and major success the somewhere i went bad again as i said...i''m searching here for what to say to describe all this in short. i guess i noticed here recently that i cut the carbs and it released the clogged tingly cold extremities feelings. i'm not sure if i am still healing or what is going on. sometimes (like this lettuce) i will eat and a great shot of energy runs through me and i want to do everything i have never imagined but a couple hours later i am plummeting and feeling the feelings of being glutened. thats the strangest one. when i finally have a moment where my food tastes all good and like it should and feel it work everywhere like it should i am ususally worse off afterward. its like if food makes me feel rotten and run-down then slowly it will absorb and give energy and almost work better. well enough trying to describe the inexplicable....

i have an Enterolab at my home and allergy testing tomorow, but have come to realize i will be wasting my time with the latter. i am going to go anyway maybe i can have a good nutritional/internal doc recommended. i guess that is the only reason. my doc(s) just sigh that it is IBS and offer no feedback and offer no impulse that they even care to help. obviously i am going to need Lyme testing. does anyone know an LLMD near NW Ohio SE Mich...? how much and what are the right tests to have done? can i get these through my regular doc, who will be someone new --cross my fingers the right one falls into my lap here--?

thanks for listening

Scotty