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So I am excited and scared, relieved and overwhelmed


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All wrapped up together.

 

Many of you know I have been on a quest for answers for dd12 for eight years now. She has seen 20 doctors and has had five million tests run on her over the years. We were told her issues were stress related due to the adoption. We were told she was having seizures even though her EEG's showed normal activity. We were told she had a brain abnormality. We were told something was wrong with her heart. I was shamed and humiliated for failing dd12 when dd9 was causing so many problems through the night that dd12 couldn't sleep, then, then I was blamed for many of her health issues and told stress and lack of sleep were the cause. I have had to hold her hand and comfort her as she was poked and prodded, as she almost fainted due to it, as she got anxious because of it. And in the end, really no diagnosis to explain all or even most of her mysterious symptoms.

 

Until last night.

 

My friend and I went to a NAMI meeting. Friend's son was recently diagnosed with a mental illness. Ds17 was diagnosed last year. I thought all his issues came on due to his double concussion because he most definitely changed over night after suffering his injury. BUT, at the same time I had pulled a tick off him and took him to the doctor out of concern for this really weird dark purple rash. The doctor was so baffled, said he had never seen anything like it before. He called in several other pediatricians to come look at it. They called us several times during the weeks which followed. Ds seemd ok so we never treated.

 

Then he started to have issues with recurrent pneumonia. I took him to several doctors for that.

 

so I went with my dear friend to the NAMI meeting which was about Lymes Disease causing mental illness. As I sat in that meeting I realized that THREE of my family members now have chronic Lymes. None of them were treated early enough.

 

Dd12 has already had a positive test. Dh has had two rashes and was sent home untreated over a year ago. Ds had a rash and was sent home untreated three years ago.

 

I have watched my very robust husband become half the man he once was. My sson has been a real issue since diagnosed with ODD. And my precious dd, I can't even put into words my feelings over all of this.

 

There is also a strong chance I have it. My stiff neck and migraines are life altering this past year.

 

As I sat through this meeting hearing about all the symptoms, my heart raced, I cried, I was an absolute mess. The doctor stayed and talked to me for over an hour after the meeting. I did a LOT of crying. He is confident that my dd not only has Lymes, but she also has two other tick borne diseases. IT EXPLAINS ALL HER SYMPTOMS. EVERY SINGLE ONE OF THEM.

 

I am so relievd yet so scared. I do not know what our future holds. Treatment is going to be aggressive because it has been possibly 8 years for dd12. All three of my family members have not been treated and now the battle will be much more difficult. And I don't even know where I stand. i don't know how this will affect our schooling but all we can do is our personal best. The doctor stressed gut chemistry because these medications can and will cause Candida, which I have suffered from for over 20 years due to extreme antibiotic use as a kd.

 

So, any words of wisdom or anything you can share will be greatly appreciated. We will likely be attacking this with heavy duty antiobiotics, herbs, and possibly traditional Chinese medicine.

 

I am an absolute wreck but ready to take this on.

 

Also, does anyone have recommendations for dogs? They are bringing ticks into our house. Frontline and all those heavy pesticides will be a last resort. i will be asking the Lymes literate doctors about this.

 

:crying:

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Also, does anyone have recommendations for dogs? They are bringing ticks into our house. Frontline and all those heavy pesticides will be a last resort. i will be asking the Lymes literate doctors about this.

:crying:

I think I would personally rather risk some of the pesticide exposure than have my whole family so horribly ill. And that is coming from one who refuses to eat margarine! Either that or I would get rid of the dogs.

 

But that is just me. Hope yo find the best possible treatment for your whole family and I am so glad that you found some answers.

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:grouphug::grouphug::grouphug:

Would sprays that deter other pests such as flies work at all for ticks? We don't really have much for ticks up here but I have a spray that I use for all the other pests on my cows and horses and it's just made from essential oils. I would be glad to send you some if you thought if would help keep the ticks of your dog.

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:party: I am happy you now have a direction to target your fight!

 

:grouphug: Hugs because it will be a long battle.

 

:smash: :banghead::cursing: Some support for your irritation for the doctors not finding it earlier!

 

:grouphug: Some love hoping that you will find answers to the questions you have.

 

 

A reminder that I work in pharmacy and have access to some databases you may not on drugs/side effects/efficacy. If you need help with researching specific meds....let me know. Most of my databases are in alliance with the FDA, that can be good or bad.

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I think I would personally rather risk some of the pesticide exposure than have my whole family so horribly ill. And that is coming from one who refuses to eat margarine! Either that or I would get rid of the dogs.

 

But that is just me. Hope yo find the best possible treatment for your whole family and I am so glad that you found some answers.

 

I agree. The pesticides are a concern for dd12 as I was told her pineal cyst is a build up of toxins. :confused: so I really try to keep chemicals and exposure to a bare minimum.

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You and I will have to talk on the phone -- i will pick my dd32's brain for her chronic lyme info and then we will speak. Oh, and Osteopathic Manipulation works well with Lyme pain and getting everything back where it should be. Both dd32, ds11 and I had OMT for lyme pain.

 

:grouphug::grouphug::grouphug:

 

Must run -- i have to pick up the final two pieces I need to finish the guest house -- Heather and her family arrive on monday!:party:

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:grouphug::grouphug::grouphug:

Would sprays that deter other pests such as flies work at all for ticks? We don't really have much for ticks up here but I have a spray that I use for all the other pests on my cows and horses and it's just made from essential oils. I would be glad to send you some if you thought if would help keep the ticks of your dog.

 

Aaawww, you are so sweet.

 

I have tried wild geranium oil, tea tree oil, lavender oil. None have worked. I have read about this online but nothing has worked.

 

Lucky us! We are in a heavily infested area of the state.:glare:

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A reminder that I work in pharmacy and have access to some databases you may not on drugs/side effects/efficacy. If you need help with researching specific meds....let me know. Most of my databases are in alliance with the FDA, that can be good or bad.

 

You have helped me before with the medications. And other things. :sad::grouphug: I will be in touch. Thanks SO much!!!:grouphug::grouphug::grouphug:

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Aaawww, you are so sweet.

 

I have tried wild geranium oil, tea tree oil, lavender oil. None have worked. I have read about this online but nothing has worked.

 

Lucky us! We are in a heavily infested area of the state.:glare:

 

How about Clove bud? I mix it with pine oil and it actually kills the flies but leaves their skin all silky.

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do you have chickens? They may help with the ticks too. Especially guineas.

 

Yes, but the puppies don't allow them to be free range.

 

I have told dh I want a flock of guineas and I also want peacocks. Yes, it will be cool to have them. Tat is not why I want them though.

 

My mastiff, especially, will want to eat the chickens. She is always over at the coop terrorizing them. If I have to, she will lose her freedom. Our family needs help and those birds are going to be a part of the solution.

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You and I will have to talk on the phone -- i will pick my dd32's brain for her chronic lyme info and then we will speak. Oh, and Osteopathic Manipulation works well with Lyme pain and getting everything back where it should be. Both dd32, ds11 and I had OMT for lyme pain.

 

:grouphug::grouphug::grouphug:

 

Must run -- i have to pick up the final two pieces I need to finish the guest house -- Heather and her family arrive on monday!:party:

 

:grouphug::grouphug::grouphug: thank you so much. I will be in contact for a time to call you.

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How about Clove bud? I mix it with pine oil and it actually kills the flies but leaves their skin all silky.

 

Oh, thanks!!! I can also use that on my barn animals. I am tired of spraying them with pesticides every summer and dd12 isn't allowed by the animals after they are treated.

 

Thanks!

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Ack! I'm so worried about my kids getting something from ticks. My DD pulled one off of her scalp the other day before she (or I) realized what it was. My other dd had one on her back, too. Sigh.

 

:grouphug: :grouphug: :grouphug: I'm sorry that you are going through this, but glad that you have some information now and possibly some direction.

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Have you tried feeding the dogs garlic?

 

I am sorry you face long term treatment but it is good that you finally have a diagnosis.

 

You know..... The man who is going to be thinning our woods eats a TON of garlic every spring. He said he has NEVER had issues with ticks and has been doing this work a LONG time. I think we need to do that.

 

Will a lot of garlic be bad for the dogs? I thought someone mentioned that here before?:confused:

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Ack! I'm so worried about my kids getting something from ticks. My DD pulled one off of her scalp the other day before she (or I) realized what it was. My other dd had one on her back, too. Sigh.

 

:grouphug: :grouphug: :grouphug: I'm sorry that you are going through this, but glad that you have some information now and possibly some direction.

 

The doctor I spoke with last night actually recommends treatment after every tick bite unless it is a common occurence; then you need to look into tick prevention.

 

I just spoke to dh. We will be getting a flock of guinea hens next year and will build them a fort in the rafters of the carriage house where they can live in the winter. We are out of barn space.

 

I have a lot of work to do to train my puppies. :svengo:

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The doctor I spoke with last night actually recommends treatment after every tick bite unless it is a common occurence; then you need to look into tick prevention.

 

I just spoke to dh. We will be getting a flock of guinea hens next year and will build them a fort in the rafters of the carriage house where they can live in the winter. We are out of barn space.

 

I have a lot of work to do to train my puppies. :svengo:

 

Really? Treatment of what sort? :confused:

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The doctor I spoke with last night actually recommends treatment after every tick bite unless it is a common occurence; then you need to look into tick prevention.

 

I just spoke to dh. We will be getting a flock of guinea hens next year and will build them a fort in the rafters of the carriage house where they can live in the winter. We are out of barn space.

 

I have a lot of work to do to train my puppies. :svengo:

 

BTW... who knows maybe you will find a newfound love for guineas. I've heard lots of people really enjoy them.

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A little bit of encouragement I hope...

I know someone from our local homeschool community who moved her family here for treatment after she found out that she had Lyme disease. She was sick for years (maybe even since she was a child) but no one believed it was so bad. After about 2-3 years of intensive treatment she is completely cured.

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Oh, thanks!!! I can also use that on my barn animals. I am tired of spraying them with pesticides every summer and dd12 isn't allowed by the animals after they are treated.

 

Thanks!

 

Denise, how about diatomaceous earth? It's non-toxic and natural. We use it on our dogs for fleas, but it also works for ticks. It is highly absorbent, so it dries out of the insects, killing them. It won't hurt you or the dogs unless you inhale the dust. (Best I can tell, inhaling a little is no big deal, but inhaling more can be bad for your lungs.)

 

Lisa

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Really? Treatment of what sort? :confused:

 

If it is not a common occurrence for your family, the doctor said two weeks of doxicyclene (sp?) after a tick bite. Like RIGHT after the bite.

 

IT IS CRUCIAL YOU ONLY SEE LYME LITERATE DOCTORS. dd12 has been to numerous doctors and specialists. She has been seen within Boston's Children's Hospital and Dartmouth Hitchcock numerous times, seen by numerous doctors in numerous different fields. NONE have been able to help us.

 

What state are you in? I can search my notes. I think there is a nation wide list of Lymes Literate Doctors but maybe someone on the board can help you, too.

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A little bit of encouragement I hope...

I know someone from our local homeschool community who moved her family here for treatment after she found out that she had Lyme disease. She was sick for years (maybe even since she was a child) but no one believed it was so bad. After about 2-3 years of intensive treatment she is completely cured.

 

:grouphug::grouphug:

 

Lyme Sucks!!

I am sorry.

My ds beat it though it was a long arduous journey.

 

:grouphug:

 

 

Thanks for the encouragement!!!

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Denise, how about diatomaceous earth? It's non-toxic and natural. We use it on our dogs for fleas, but it also works for ticks. It is highly absorbent, so it dries out of the insects, killing them. It won't hurt you or the dogs unless you inhale the dust. (Best I can tell, inhaling a little is no big deal, but inhaling more can be bad for your lungs.)

 

Lisa

 

Thanks!!! We bought two 25lb bags of food grade DE last week. Today it is dry enough to spread it. Dh and I will be wearing masks to be safe.

 

Will it kill off the frogs and toads? :sad:

 

I feel so bad that it's going to kill the good with the bad. Dd's like to collect fireflies in a jar. The ones in the grass are an easy catch.;)

 

Btw, I will be in touch. Dd has agreed.:grouphug::grouphug::grouphug:thank you SO much!!!

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Denise, how about diatomaceous earth? It's non-toxic and natural. We use it on our dogs for fleas, but it also works for ticks. It is highly absorbent, so it dries out of the insects, killing them. It won't hurt you or the dogs unless you inhale the dust. (Best I can tell, inhaling a little is no big deal, but inhaling more can be bad for your lungs.)

 

Lisa

 

:iagree::iagree: I had forgotten about DE. I use it for my dogs for fleas, or walking dandruff. It won't hurt anything unless those things land on your animals. I just rub it on the dogs and I have been known to put it on my kids if they are playing with new dogs that are here.

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Denise, how was your daughter diagnosed? Did she have a positive Lyme test? Is it possible to still have symptoms (damage) after the Lyme has been treated and the patient tests negative?

 

Because I'm still baffled about my own daughter, who had Lyme last year. She goes to a Lyme literate doctor, and she has been pronounced cured, but she is a fragment of what she was a few years ago. She can no longer do ballet and gets exhausted with the least physical exertion. She'll be going to the cardiologist next week to have a stress test to see if it's a heart issue. But she wasn't like this before she had Lyme.

 

Does Lyme Disease keep doing damage after it's been cured with antibiotics?

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:grouphug::grouphug::grouphug:

 

My DS has had Lymes for 2 years and was only diagnosed a couple of months ago. I'm still fighting to get him proper treatment (the "infectious disease specialist" is quite adamant that 6 weeks of doxy should totally get rid of it :glare:). It's hard enough to get a proper diagnosis — then you have to fight with all the non-Lyme-literate MDs telling you that the Lyme-literate docs are quacks, there's no evidence for Lyme causing any symptoms other than a rash and maybe a swollen joint or two, blah blah blah. Infuriating! :banghead:

 

Jackie

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Denise, how was your daughter diagnosed? Did she have a positive Lyme test? Is it possible to still have symptoms (damage) after the Lyme has been treated and the patient tests negative?

 

Because I'm still baffled about my own daughter, who had Lyme last year. She goes to a Lyme literate doctor, and she has been pronounced cured, but she is a fragment of what she was a few years ago. She can no longer do ballet and gets exhausted with the least physical exertion. She'll be going to the cardiologist next week to have a stress test to see if it's a heart issue. But she wasn't like this before she had Lyme.

 

Does Lyme Disease keep doing damage after it's been cured with antibiotics?

 

She may have been cured of lyme and still have another tick borne disease. I was reading about it last night after finding several ticks on my kids. A lot of times ticks with lyme spread other lesser known diseases as well.

 

Short article

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Denise, how was your daughter diagnosed? Did she have a positive Lyme test? Is it possible to still have symptoms (damage) after the Lyme has been treated and the patient tests negative?

 

Because I'm still baffled about my own daughter, who had Lyme last year. She goes to a Lyme literate doctor, and she has been pronounced cured, but she is a fragment of what she was a few years ago. She can no longer do ballet and gets exhausted with the least physical exertion. She'll be going to the cardiologist next week to have a stress test to see if it's a heart issue. But she wasn't like this before she had Lyme.

 

Does Lyme Disease keep doing damage after it's been cured with antibiotics?

 

 

i am so sorry. i understand how much your heart hurts for your dd. I still cry over the fact that dd had to give up synchronized swim, her passion she wanted to do for the rest of her life. She, too, was just weak to continue on with it.

 

What I learned last night is that there is no cure. They go into remission and hopefully stay in remission. If your dd is still not right, I honestly do not think she was treated long enough. There are no fool proof, accuratests for Lymes or to see if they are cured, but there is a promising new tests which grows cultures to see if you still have lymes. It is called Advanced Lab in PA. Also, Igenex.com offers more tick borne tests. Another thing you may want to consider is that since your dd is not well, she may have other tick borne diseases. The doctor last night recommended we treat those first and then the lymes. He knows his stuff and I fully trust him.

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:grouphug::grouphug::grouphug:

 

My DS has had Lymes for 2 years and was only diagnosed a couple of months ago. I'm still fighting to get him proper treatment (the "infectious disease specialist" is quite adamant that 6 weeks of doxy should totally get rid of it :glare:). It's hard enough to get a proper diagnosis — then you have to fight with all the non-Lyme-literate MDs telling you that the Lyme-literate docs are quacks, there's no evidence for Lyme causing any symptoms other than a rash and maybe a swollen joint or two, blah blah blah. Infuriating! :banghead:

 

Jackie

 

:grouphug::grouphug: Been there, just wanted to give you a hug.

The ID Doctor was the worst of them.

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:grouphug::grouphug::grouphug:

 

My DS has had Lymes for 2 years and was only diagnosed a couple of months ago. I'm still fighting to get him proper treatment (the "infectious disease specialist" is quite adamant that 6 weeks of doxy should totally get rid of it :glare:). It's hard enough to get a proper diagnosis — then you have to fight with all the non-Lyme-literate MDs telling you that the Lyme-literate docs are quacks, there's no evidence for Lyme causing any symptoms other than a rash and maybe a swollen joint or two, blah blah blah. Infuriating! :banghead:

 

Jackie

 

Your son needs a new Lyme Literate doctor. Many claim to be one but they are NOT.

 

Maybe there is a database here Lymenet.org

 

What state are you in?

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:grouphug::grouphug::grouphug:I am so sorry.

Our 16 year old has neurolyme, she has been sick for years. Finally dxed last August.

 

This doctor's dd had to drop out of school in the 8th grade and was under treatment for seven years. She went from straight A's to not being able to read at all. :grouphug::grouphug::grouphug:Good luck on your journey!!!

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:grouphug::grouphug: Been there, just wanted to give you a hug.

The ID Doctor was the worst of them.

 

The wonderful doctor I spoke to last night said this is very common. He told is to stay away from Yale, Tufts, Brigham and Womens, Boston Childrens, etc.

 

Your son really needs a new doc! :grouphug:

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:grouphug: I am sorry you are going through this. I am friends with a man that had what doctors considered one of the worst cases. Him and his son both had Lyme's. One thing they learned through a trial study was the reason people have such a hard time getting over it is because after treatment when the symptoms start to come back rather than wait it out doctor's would start treatment again. They said the time right after treatment the symptoms are the worst but if you can ride it out and not start another cycle of treatment than it will cure you. This man battled for ten years. After doing this he was cured an has never had another problem. Neither has his son. HTH

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:grouphug: You will get through this. It will be a bumpy road, but you can do it. I remember the excitement, the fear, all of it... of being just diagnosed after years of not knowing what was wrong and going to specialist after specialist.

 

In fact, I wonder if the LLMD you saw speak might be the same who left me in tears, with answers, years ago. That was in 2005, and I was diagnosed with MS and DH and I were looking for a one story home as he could not keep carrying me up and down the stairs. Lyme and co-infection treatment gave me a life again! It took 4.5 years of treatment, it was a hard road, but worth it. I think now, with what my LLMD has learned, my treatment would be shorter. (And, by the way, I am now actually in treatment again, for one remaining co-infection.) Had I been diagnosed years earlier, I would not have the lifelong consequences that I do now. But, I do have a life! And your family will, too!

 

Does your daughter have bartonella? (You don't have to answer that here, for privacy, of course.)... If so, I found bartonella treatment harder than some of the other co-infections. Be mentally prepared for that. Bart seems to hit teens hard, too, and a lot of the symptoms seem to mimic mental illness in teens. Our family has some unfortunate experience there.

 

Follow all directions to a T. Don't ever neglect making sure your kiddo (and everyone else on treatment) takes probiotics. And adding in S. Boulardii would be very, very wise. A good S. Boulardii is Florastor, available at CVS. It is a beneficial yeast that will help prevent C Diff. We all stay so focused on avoiding candida, that it's easy to forget to monitor the overgrowth of C Diff, which is scary, painful, and can derail Lyme treatment (yes, I had that experience, too, ouch!). Take all the supplements for reducing inflammation and herxing recommended. They will help.

 

And... Don't overlook the new protozoa recently discovered by Dr. F in AZ. Protomyxozoa Rheumatica. I am treating for it now, and hoping that it will alleviate my remaining symptoms (fatigue and migraines).

 

You are welcome to pm me, if more support would be helpful. I know you have lots already, but it's always good to have another brain in one's corner. :)

 

For ticks on the animals... You have suggestions already, but I don't think I saw anyone mention Damminix Tick Tubes. Dr B (the big LLMD) recommends those, if you have property. They are very helpful in reducing tick populations over time.

 

Oh! One more note - my LLMD also advocates treating tick bites. Waiting till symptoms show can mean that the spirochetes are already wreaking havoc on one's immune system, allowing the other co-infections to take hold. I am so grateful, living in a Lyme endemic area, to have our LLMD on board, and that she treated my son with 30 days of abx, when we needed it. I know there are people who disagree with that approach, but the lifetime of pain that Lyme has given me makes me take it as very serious threat to the well-being of my family. If we were not in an endemic area, I might have a different view on that issue.

 

:grouphug: Hang in there. Knowing is half the battle!

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Oh, I woll love them. i love all animals. It's a problem.:tongue_smilie:

 

Dh has also agreed to get peacocks!!! :hurray:

 

 

I do think our chickens have helped keep the tick population down some on our property. I still see check us. I had my dogs groomed the other day and the groomer found 3 ticks on one dog, and none on the other. I said "Sorry you had to deal with that!" (Ticks are everywhere here). She said, "No. It was great. That's the fewest I've taken off any dogs lately. I couldn't believe your other dog didn't have any. I had one dog the other day with 40 ticks." Can you imagine? This is not a cheap grooming place, so most of the dogs would be well-cared for, I would think. But the tick population here is crazy.

 

I have Lyme (caught and treated, and one of my dogs has been treated for Lyme. Her numbers are low, and she is very active and healthy. But not out of the woods by any means.

 

I hope you and your family get the treatment you need, and start to feel better soon!

 

One thing- Guineas are LOUD. Oh so very LOUD. I had to get rid of them. The the first one was hawk dinner, and I was grateful.

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Also, does anyone have recommendations for dogs? They are bringing ticks into our house. Frontline and all those heavy pesticides will be a last resort. i will be asking the Lymes literate doctors about this.

 

:crying:

 

 

I think the exposure to your dd would be minimal. They have pills that dogs can take.

 

 

 

Now the question of the century.....why are there so few doctors who recognize and know how to treat LD?

 

And my family laughs at me over my tick phobia.

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Yes, for those considering guineas or peafowl, be forewarned that they are VERY LOUD. Their calls can really set your teeth on edge. Also, they distribute considerable quantities of manure everywhere they range, so you might have to hose down the yard more often or restrict your little ones to other areas prior to cleaning.

 

We do not live in a tick epidemic area but do get them occasionally. Our Dr. recommended that we take any ticks we remove that have been attached to us, place them on a strip of adhesive tape, fold it over to trap/kill them, note the person and date of removal on the tape, and keep them in a plastic baggie. He said that would allow us to test the tick also if we developed any symptoms. In our area, Rocky Mountain Spotted Fever is more likely than Lyme disease.

 

We do have free range chickens, which I'm sure helps. However, we do occasionally get a tick.

 

One possibility for dog owners who can't use chemical pesticides for some reason might be to shave their dogs' coats quite short during the tick months so that at least the bugs could be more easily seen and removed before being carried into the home.

 

To the OP, I am sorry you are so beaten down and disheartened by all this. But whether you can see it or not, you have passed a significant milestone. You have turned the corner and are now working toward treatment and resolution rather than still being continually battered by an unknown foe. It will be hard and it will be long, but your eyes are open now and you can see what you are fighting. Take heart. Although the road is rough, you are on the downhill slope.:grouphug:

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