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CarlaB

The Lyme Disease Thread

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Thanks,

Carla, I understand how you feel. I will heavily consider that. They were all tiny tiny ticks. Scary stuff. Plus I know she got the lyme bacteria the first time on our land :( That makes me sad, because my children and this land are my heart. I have to keep my fears in check are we would be on antibiotics constantly.

My daughter was only 14 months old. she got the rash, but had no cold, or flu symptoms. In all these years she has never had a single body pain. I truly think we caught it in time. she did 3 weeks of antibiotics.

Thank you for your help.

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Carla,

Is the 6-8 weeks the minimum for first exposure to lyme?

I know of someone who was told 10 days abx would cover everything. I thought 3-4 weeks minimum myself, but Mayo says that the longer term abx is more harmful. I, of course, don't agree with that line of thinking and I don't see how a couple months could hurt to make sure the lyme is taken care of when someone is first exposed to it.

Wow, I believe even the CDC says three weeks! I read today, and can't remember where, that ILADS recommends 6-8 weeks. I know that after suffering so badly from this disease, I'd rather overtreat than undertreat.

Thanks,

Carla, I understand how you feel. I will heavily consider that. They were all tiny tiny ticks. Scary stuff. Plus I know she got the lyme bacteria the first time on our land :( That makes me sad, because my children and this land are my heart. I have to keep my fears in check are we would be on antibiotics constantly.

Yes, you really have to strike a balance. Personally, I rarely step off the pavement. I know it's extreme, but it's not as extreme as what I've lost to this disease in the past 35 years.

The very tiny ticks are the deer ticks, which are the ones that are most heavily infected .... so that is very scary.

I would take precautions when out on the land -- light colored clothing, long pants tucked into socks, tick checks, DEET, etc.

My daughter was only 14 months old. she got the rash, but had no cold, or flu symptoms. In all these years she has never had a single body pain. I truly think we caught it in time. she did 3 weeks of antibiotics.

That is really good to hear! Three weeks is enough for some, not for others .... I'm glad it seems to have been enough for her.

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Wow, I believe even the CDC says three weeks! I read today, and can't remember where, that ILADS recommends 6-8 weeks. I know that after suffering so badly from this disease, I'd rather overtreat than undertreat.

This person is taking the 10 days as good enough. It just bothers me because I know what chronic lyme has done to you and others and I'd rather be on the safe side myself if this ever came up for my family.

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This person is taking the 10 days as good enough. It just bothers me because I know what chronic lyme has done to you and others and I'd rather be on the safe side myself if this ever came up for my family.
All you can do is show them the CDC recommendations .... even though they are still on the low side, it's still significantly more than 10 days. No one would believe what Lyme can do until they know someone it's happened to.

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I'd push for 6-8 weeks myself, after suffering for so many years undiagnosed and still battling lyme after 7.5 years of abx.

My thinking is the abx is much better to be on than the drugs for arthritis, etc. which are even worse on the body.

Also, you could consider the all herbal protocol if you want to avoid abx, at least it might be worth a try.

Sherry

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Thanks,

Carla, I understand how you feel. I will heavily consider that. They were all tiny tiny ticks. Scary stuff. Plus I know she got the lyme bacteria the first time on our land :( That makes me sad, because my children and this land are my heart. I have to keep my fears in check are we would be on antibiotics constantly.

Fedora,

I read on another thread that you yourself have some symptoms (I think it was joint pain?) and have not yet found a cause. Since you have ticks in your area I would strongly recommend that you yourself be tested (Igenex). Even if you've never seen a rash you could very well still have Lyme and that could be the reason for your ongoing pain.

The majority of people with Lyme never actually see a bite or a rash.

I also believe that there may be a genetic susceptibility when it comes to Lyme disease. Often many members in the same family will have symptoms caused by Lyme...sometimes EVERY family member is symptomatic. There are also a large percentage of people who test positive for Lyme and yet do not suffer any symptoms and have no problems with the infection....suggesting that some people are less susceptible.

RN and Lyme expert Ginger Savely says similar Lyme disease symptoms frequently show up in members of the same family. In her experience treating patients with Tick Borne diseases at health care clinics in Texas and San Francisco, CA, some families seem to be more keenly susceptible to falling ill from a tick bite. Genetic disposition may play an important part.

The Borrelia bacteria does not affect all people to the same degree. Lyme disease symptoms vary from person to person, but family members may present similar symptoms. And some may not get sick at all, exhibiting a stronger genetic resistance to succumbing to the infection.

"It is always impressive to me how many people do have this infection that are totally fine. Many times, I will check family members that are still healthy, and they actually test very positive for the disease, although they have no symptoms," says Ginger.

If you have symptoms and are exposed to ticks on your land I definately think it would be worthwhile to have yourself tested.

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FOR IMMEDIATE RELEASE May 1, 2008

CONTACT:

Nicole Rodgers 202-822-5200

Settlement Announced in Landmark Investigation of Lyme Disease Diagnosis

and Treatment Guidelines

Patients

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Rachel,

Thanks for your concern. I do have symptoms for sure. I have talked to my dr. about getting tested. Since I pay for all my medical care up to a very high deductable, I am doing what I can on my own and then going in with a list of unresolved issues. But my shoulder pain did get resolved a lot when I went off gluten. As did alot of my problems. I feel lucky to be doing so much better. It has only been 3 and a half months since I went off gluten. I have had symptoms for 23 years though. My symptoms started 11 year before I moved to this land. I was trying to give myself time to see how much it improved from that and taking more calcium, mag, B12 supplements. I am trying out different foods to eliminate. Plus weight lifting and stretching. If it isn't gone soon I am going in to get tested.

I know a couple here. She has many lymes symptoms and has tested positive on all tests. Her husband tested positive and has no symptoms. I wanted to wait to make sure my symptoms weren't from something else just in case I do test positive. I need clarity about what symptom is from what.

My joint problems are from my muscles pulling on them I am pretty sure. Can Lyme's cause this? My shoulder joint doesn't really hurt, just all the muscles. And my back curves to one side.

Is the IgeneX test the absolute best. My DD tested positive through Quest.

Thank you again. I will be back to let ya'll know.

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Quest is not as accurate .... but if she has a positive from Quest, it's definitely positive!!! Their testing isn't as sensitive as IGeneX. If it's cheaper for you, get tested by Quest, then if it's negative, retest with IGeneX.

I get joint and muscle pain from Lyme, so I think it can be the cause of what you describe.

We posted at the same time .... I hope you scrolled up to see the article I just posted. :)

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Settlement Announced in Landmark Investigation of Lyme Disease Diagnosis

and Treatment Guidelines

Gret news Carla, thanks for posting.

Not only for lyme patients but for health care rights in general.

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Carla,

I came back and read that!!!!!

How wonderful and crazy!!! They had financal reasons for dismissing information. Yuck. I got emotional reading this. I know several people with chronic Lyme disease in my community. This is such great news for patients and doctors.

I'll be honest....I don't want it, so maybe I am in denial. But if I have it I either got it as a kid or 12 years ago. But if I have it, at least I'll be in good company :D

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I don't want it either. :( I got it 35 years ago, so it's possible that it's behind your health problems. It's better to start treating sooner than later. :) I was in denial (ask Rachel) ... the ticks that bit me didn't have Lyme! LOL (but they did).

It will take about a year, according to another article I read, before the guidelines are actually changed. They have to start over completely.

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I am sorry you have it. That is such a long time to go untreated. I know my family is full of celiac symptoms, not just me. Is there anywhere on here where you and others wrote down the order of your symptoms? That would be helpful. Also, did you ever have a time where symptoms went away mostly for years? I have read on websites, but know those aren't always how it happens in real life.

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Carla,

Great article! :D I hope that things will definately improve for lyme treatment and that doctors won't be harrassed anymore.

Hope it will ripple through the rest of healthcare too.

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I am sorry you have it. That is such a long time to go untreated. I know my family is full of celiac symptoms, not just me. Is there anywhere on here where you and others wrote down the order of your symptoms? That would be helpful. Also, did you ever have a time where symptoms went away mostly for years? I have read on websites, but know those aren't always how it happens in real life.

fedora, I'm still kind of in denial about lyme :rolleyes:

We suspect I have had symptoms of it since I was young, so over 20 yrs +. I was always a low energy child (adrenal stress), had hormonal difficulties from my first menses, digestive issues began shortly after that.

I experienced lots of shoulder and neck pain and stiffness all through highschool and then I had a strange rash, break out spots all over my scalp (it wasn't dh though).

This is just for starters. I had/have 63 of the 75 lyme symptoms off the list Carla posted in the first few posts of this thread.

I imagine the order of symptoms varies for everyone.

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I am sorry you have it. That is such a long time to go untreated. I know my family is full of celiac symptoms, not just me. Is there anywhere on here where you and others wrote down the order of your symptoms? That would be helpful. Also, did you ever have a time where symptoms went away mostly for years? I have read on websites, but know those aren't always how it happens in real life.

Thank you. :) I have a lot of family members with celiac-type symptoms, too. But on the other hand, Lyme Disease can cause GI disturbances and sensitivities to foods, smells, etc., so it could be caused by Lyme.

On page two of this thread I told my Lyme story. I did have periods of time where I was almost completely asymptomatic. It's funny how some people like me can have few symptoms for years and years, and others get bitten and get sick right away.

I think in general I have a very strong immune system. But I had some intense stress and another bacterial illness that triggered the Lyme to make me sick again. This time it took hold so completely I needed meds to get rid of it. The other three times I wasn't this sick and got rid of it with fresh air, sunshine, exercise, and diet.

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I am sorry you have it. That is such a long time to go untreated. I know my family is full of celiac symptoms, not just me. Is there anywhere on here where you and others wrote down the order of your symptoms? That would be helpful. Also, did you ever have a time where symptoms went away mostly for years? I have read on websites, but know those aren't always how it happens in real life.

I wrote out my symptoms a couple of pages back I think...or was it on the other thread, lol. I had about 47 of the 75 symptoms. I can't give you a timeline of when they happened...they are a mish-mash of symptoms and they come and go in varying degrees of severity. The absolute worst symptoms for me currently are muscle soreness (almost severe), neck stiffness, and my neurotransmitters and adrenals are totally messed up causing all kinds of problems. Anyway, here are my symptoms:

Never saw a tick bite or rash

Of the symptoms listed on the first page, these are the ones I

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I'm still kind of in denial about lyme :rolleyes:

We suspect I have had symptoms of it since I was young, so over 20 yrs +. I was always a low energy child (adrenal stress), had hormonal difficulties from my first menses, digestive issues began shortly after that.

I experienced lots of shoulder and neck pain and stiffness all through highschool and then I had a strange rash, break out spots all over my scalp (it wasn't dh though).

This is just for starters. I had/have 63 of the 75 lyme symptoms off the list Carla posted in the first few posts of this thread.

We'll get through the denial as slowly as necessary. :)

You've had symptoms for that long! :o

That's a lot of symptoms! :o

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I know a couple here. She has many lymes symptoms and has tested positive on all tests. Her husband tested positive and has no symptoms. I wanted to wait to make sure my symptoms weren't from something else just in case I do test positive. I need clarity about what symptom is from what.

I'm someone who had some positive bands on my Western Blot (although not enough to meet the criteria for a positive test result). I am very symptomatic and spent several months having various tests done to determine how much...if any of it...is being caused by Lyme.

Typically with chronic Lyme there are other factors involved including additional infections and heavy metals. It becomes very difficult to know whats causing what...there are just too many things going on at once.

After all the testing it appears that Lyme actually isnt playing a big role in my health issues. Even though it does appear that I've been exposed to it...it seems that its not the cause for my symptoms. At least for now my immune system seems to be handling it. I'm not being treated for Lyme at this time....although I did take herbal antimicrobials for a short time last year.

I do have big problems with heavy metals and yeast... but lyme....not so much.

I dont know why that would be unless its true that some of us are just more susceptible to the Lyme toxins than others. :huh:

I would definately look into it if you continue to have symptoms.

Is the IgeneX test the absolute best. My DD tested positive through Quest.

Your daughter is very fortunate to have tested positive with Quest. Personally, I would not consider this lab for Lyme testing...nor would I recommend it. The IgeneX tests are far more sensitive...whereas Quest misses the majority of Lyme cases.

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Connecticut Attorney General's Office

Press Release

Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter

May 1, 2008

Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.

The IDSA guidelines have sweeping and significant impacts on Lyme disease medical care. They are commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions.

Insurance companies have denied coverage for long-term antibiotic treatment relying on these guidelines as justification. The guidelines are also widely cited for conclusions that chronic Lyme disease is nonexistent.

"This agreement vindicates my investigation -- finding undisclosed financial interests and forcing a reassessment of IDSA guidelines," Blumenthal said. "My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.

"The IDSA's Lyme guideline process lacked important procedural safeguards requiring complete reevaluation of the 2006 Lyme disease guidelines -- in effect a comprehensive reassessment through a new panel. The new panel will accept and analyze all evidence, including divergent opinion. An independent neutral ombudsman -- expert in medical ethics and conflicts of interest, selected by both the IDSA and my office -- will assess the new panel for conflicts of interests and ensure its integrity."

Blumenthal's findings include the following:

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What fantastic news! Now if the new guidelines would just cover alternative and herbal treatments!!!!!

Here's a link I found that has a nice overview of lyme, and talks about HBO therapy.

I've been looking into this a little bit because I found out that HBO is readily available here in China. Don't know prices yet though.

I'd love any input you all might have.

http://www.reimerhbo.com/lyme_dis.htm

Sherry

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Thank you for the article Sherry. Keep us posted on how HBOT works for you! I have access to the therapy myself, but likewise don't know how much it costs.

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Sherry,

I thought that was a pretty informative article.

The HBO does sound promising, with a knowledable practitioner at the helm. Sounds like it helps a lot of people who've not been able to shake lyme with the abx courses.

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