# Okay, has anyone else had Lymes disease?



## allheart (Oct 3, 2008)

I wasn't going to say anything, as people are going through a whole lot more difficult situations, and I did share with a few, but I'm getting impatient :smpullhair:
This will be the second time for me, the same time as last year. Last time, first week on the antibiotics, I started to feel almost instant improvement. Going on 2nd week now, and feeling "some" improvement, but still knocking my socks off. 

Now I am so scared of gorgeous deer . Even though you can get it from gardening, but I suspect otherwise for me. 

Yesterday, was MIL's every 3 mos gyn visit. So I bathed her, and off hubby and I go for her visit. Come back home, get her all settled again.

I come out her front door, and these very nice gentleman, with his dog, and little boy (so cute), said, there are four dear behind your house (I guess he thought it was our house). Anyway, I couldn't get in the car fast enough, I know that sounds silly, but wait there's more, as I am getting into the car, I holler over, "You do use a prevenative for your dog, don't you?". Thank goodness he said "oh yes". Then as I am sitting in the car, waiting for hubby, oh my goodness, the beautiful deer, had to be 4 or 5 of them, gracefully came running from behind the house, and across the street. Boy they are beautiful creatures.

I guess I am just so frustrated that it came back, and my Primary doc, pretty much treated it, as I though I broke a finger nail. Sooooo I called a lyme specialist and they asked my Primary to fax over the blood work. The lyme specialist said all my numbers look great, except for the lyme numbers. 

Anyway, has this happened to anyone else. I tell you what, I thank the heavens their is a preventative for our babies, and yes I do use it.

My BIL has a Jack Russel, who I love so much. They have nothing but deer behind their home, they did not use a prevantive and now dear Chole has it . Actually she had it before me. Now she is having problems with her kidney's - kidney stones, blood in her urine....don't get me started on that.

Anyway, I guess I am just frustrated that it came back and came back roaring, although some of the symptoms have calmed down. The only time it doesn't bother me, is when I am taking care of the kids. It bothers me a little bit, when taking care of my MIL, as I have to sit on the floor and do her legs. Just hard getting up.

Anyway, has anyone had a reacurrence of lymes? Or know someone who has. 

Like I said, I know there are many folks going through much more difficult situations, but I am a tad frustrated, that I want to do so much, I get some of it done, but then get so darn tired. And this time I have numbness in my left hand, mostly the pinky finger and the one next to it. 

As I said it is not a problem when I am engrossed in taking care of the kids, it's just afterwards, I am barely able to do anything else, and I don't want to give into it at all. 

Any words of wisdow would be most appreciated. Or anyone who has or know someone that this happened to.

And please keep my BIL's dog (on my hubby's side) in your prayers, to be honest, I hope they never get a dog again. They are wonderful people, but it's like talking to a wall.

I am sorry to share this, I wasn't going to, as I thought week one, just like before, most of the symptoms would disappear.

So it's not to make anyone feel bad for me, no reason to, I promise, just frustrated.

And can you beleive their is no human vaccine for it? That just blows my mind.

Thanks so much, 
Christine


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## Ladysmom (Oct 19, 2004)

Just about all my former friends and neighbors in Dutchess County, New York have had Lyme disease. The deer ticks were just horrible when I moved 18 years ago and apparently they are worse now. Hard to imagine.

Does your doctor think you have been reinfected or that you never fully recovered from your first bout with Lyme?

I would try to find a specialist who deals with Lyme. As you are aware, it can have very serious long term effects if it is not easily cleared up. With such a high rate of Lyme in the Northeast, surely there must be physicians who are specialized to treat it.


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## babycake7 (Jan 30, 2012)

I don't have any first hand experience with this, canine or human, and don't know of anyone who has it. We don't have too much of a tick problem here but I do know my vet highly recommends the preventative for the dogs regardless. I did see something on tv about someone who had it and it would seem to be very frustrating to the affected person...the constant fatigue.  I am sorry for you, friend! I hope you are feeling better again soon.


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## Furbabies mom (Jul 25, 2011)

Christine, Tori, Gracie's mom 's introduction tells about her chronic lyme disease. Gee, I don't know much about it. I do hope that you feel better,moms aren't allowed to get sick! At least that's how it feels to me! LOL


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## allheart (Oct 3, 2008)

Ladysmom said:


> Just about all my former friends and neighbors in Dutchess County, New York have had Lyme disease. The deer ticks were just horrible when I moved 18 years ago and apparently they are worse now. Hard to imagine.
> 
> Does your doctor think you have been reinfected or that you never fully recovered from your first bout with Lyme?
> 
> I would try to find a specialist who deals with Lyme. As you are aware, it can have very serious long term effects if it is not easily cleared up. With such a high rate of Lyme in the Northeast, surely there must be physicians who are specialized to treat it.


Marj, you are 1000% right. Not sure if I fully recovered or was reinfected, I really don't think I was reinfected. I am so sorry for your former friends. Right now it is down to pain in the legs and real bad in the left knee, but that's how it started the first time. You bet, right away, I looked up what they call a Lyme literate specialist. And had my bloodwork faxed to them. If after the 4 weeks of antibiotics doesn't make it all go away, or any lasting effects remain, then I can then go to the specialist. The specialist did say, for now it is the proper treatement, the antibiotic. My thing is, if it's gonna stay, stay, don't play this game of leave and come back. And I know, after the lymes there can be permanent nureolgical damage. My thinking and memory is not quite all back yet, they say that is the last to come back. Sorry for even bringing it up, as I said so many people are suffering from so many more serious things, but I have things to do!!!! . And I don't like unknowns. How are your friends doing with it? Did it go away for them? Marj, thank you so much. I'm very curious how your friends are doing with it. I never in a million years thought it would come back, I have been so careful.



babycake7 said:


> I don't have any first hand experience with this, canine or human, and don't know of anyone who has it. We don't have too much of a tick problem here but I do know my vet highly recommends the preventative for the dogs regardless. I did see something on tv about someone who had it and it would seem to be very frustrating to the affected person...the constant fatigue.  I am sorry for you, friend! I hope you are feeling better again soon.


Hi my dear Hope, I think you gave it to me :HistericalSmiley: Just kidding. Thank God, it's not prevalant there. But I do agree with your vet to use it. Some may disagree, but I would never want my babies to get it, ever, that's all I keep thinking about, when it can be prevented. Poor Chloe, it breaks my heart. Thank you my dear friend. :wub:



Furbabies mom said:


> Christine, Tori, Gracie's mom 's introduction tells about her chronic lyme disease. Gee, I don't know much about it. I do hope that you feel better,moms aren't allowed to get sick! At least that's how it feels to me! LOL


Thank you so much for letting me know about dear Gracie's Mom, I really appreciate that. I know, Mommy's cant get sick. And the poor babies, when I lay down, it's like they know, and I reasure all three of them, Mommy is okay. In the beginning the headaches were ungodly, and Mia would lick every place it hurt, bless her. Thank you so much for letting me know about Tori, I really appreciate it. You know alot of docs know zero about this disease. Which adds to the frustration. When I wake up, I feel refereshed, then it slowly goes down hill. I promise I am not complaining, but I just want to get a handle on it. Thank you so much. hugs.


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## edelweiss (Apr 23, 2010)

Christine, check w/Maid2Maltese as I think she had Lyme disease as well.
As I told you already our friend's daughter has it & neurological problems because it wasn't caught in time & treated w/IV antibiotics. It is fairly prevalent in Europe also but they are pretty aggressive in the treatment of tick bite. They also offer a tick shot here in Europe (I don't think in Greece though) and kids in school are required to have it.
Our friend's daughter has issues w/walking etc. she has it come back in cycles. I would encourage you to see a specialist.


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## allheart (Oct 3, 2008)

edelweiss said:


> Christine, check w/Maid2Maltese as I think she had Lyme disease as well.
> As I told you already our friend's daughter has it & neurological problems because it wasn't caught in time & treated w/IV antibiotics. It is fairly prevalent in Europe also but they are pretty aggressive in the treatment of tick bite. They also offer a tick shot here in Europe (I don't think in Greece though) and kids in school are required to have it.
> Our friend's daughter has issues w/walking etc. she has it come back in cycles. I would encourage you to see a specialist.


 
Thank you dear Sandi. I am so glad in Europe the offer a tick shot. I really appreciate your input. And will also ched with Maid2Maltese, thanks so much. I have also reached out to Gracie's Mom.

Thank you ever so much,
Christine


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## romeo&juliet (Jun 23, 2011)

i dont know about the disease that much but i sure will pray for you to have the strenght and support to ge through this i cant even imagine what you must be going through :grouphug::sLo_grouphug3:big hugs :innocent::innocent:


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## MalteseJane (Nov 21, 2004)

I have a nephew who had lyme disease. Maybe it was caught early on because I have not heard that he still has problems with it. But since then he came down with diabetes and since it has to do with the auto-immune system we are asking ourselves if this is not because of the lyme. We cannot remember anybody in the family with diabetes. Now one of my niece's had a boss who got lyme disease and it was not caught early on and for years he had problems because of it and he might still have them. He still had them when he retired. Both of those people are in France.


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## allheart (Oct 3, 2008)

romeo&juliet said:


> i dont know about the disease that much but i sure will pray for you to have the strenght and support to ge through this i cant even imagine what you must be going through :grouphug::sLo_grouphug3:big hugs :innocent::innocent:


Thank you so much sweet Ursula :wub: Many hugs.



MalteseJane said:


> I have a nephew who had lyme disease. Maybe it was caught early on because I have not heard that he still has problems with it. But since then he came down with diabetes and since it has to do with the auto-immune system we are asking ourselves if this is not because of the lyme. We cannot remember anybody in the family with diabetes. Now one of my niece's had a boss who got lyme disease and it was not caught early on and for years he had problems because of it and he might still have them. He still had them when he retired. Both of those people are in France.


 
Thank you so much for sharing your experiences. It means so much. It does make you wonder, as is just seems lymes goes after everything.

Bless your nieces boss, my gosh, even when he went to retire. 

Thank you so much again for sharing, I really appreciate it. Hugs.


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## Grace'sMom (Feb 22, 2012)

Hi,

I do have Chronic Lyme Disease & Chronic Tick Borne Illness. I'm happy to talk about it with anyone any time. Just about anyone who has Chronic Lyme is on a mission to educate as many people as possible. 

I wrote a little to Christine (yep that was a little!), but will share some here.

I was bitten as a child between ages 10-13 years. I grew up in an area where deer, mice, all kinds of wildlife lived. Ticks are everywhere, but more so in areas with wildlife. But even living in the area I grew up in - not one doctor ever thought to test me for Lyme. And I was a sick child/teen.

I was diagnosed January 2011. The summer of 2010 I told my doctor I wouldn't be here another year if we didn't figure out what was wrong. I still believe that. I was dying. My body had been battling this illness for over half my lifetime and things were getting bad.

I'm doing treatment now. Have been since diagnosis. It is very slow. The longer you have Lyme, the longer it takes to treat. And there is NO CURE for Chronic Lyme Disease and Chronic Tick Borne Illness. The only hope right now is for remission.

Lyme is complex and tricky, and often not alone. Ticks and other biting insects like fleas, flies, etc can transmit other illnesses along with the Lyme.

My "offical" diagnosis is:

Lyme Disease
Bartonellosis (Bartonella)
Babesiosis (Babesia)
Mycoplasma
Chronic Epstein Barr Virus

The more layers that are peeled back the more we are finding. Many of these illnesses "hide" the others. So often you will test negative until one is treated, and then the others become clear.

Lyme steals lives. I am 30 years old. I started getting really sick when I was 22. I had months where I'd be really sick but then spans of time when I was fine. But I caught "colds" all the time and was always sick. I didn't think much of it because my doctors never did.

But then in 2007 I got sick with what I thought was the flu and I haven't been the same since. I had to quit working full time in 2009 and move back home. Officially stopped working in 2010.

I was an honors high school student who took college classes. I was accepted to a top university. But I was never able to finish one semester. By that point I'd been sick long enough that the Lyme was beginning to effect my brain.

I have problems with numbers (simple math), memory, finding things that get moved, disorientation, I get lost really easily, word confusion, vertigo, ear ringing, headaches, light sound and motion sensitivity, facial and limb twitching. Those are just my basic neuro symptoms.

Other symptoms are joint pain, muscle pain, bone pain, debilitating fatigue, nerve pain (similar to MS), stabbing pains, muscle weakness, multiple food allergies, GI disorders, rib pain, chronic cough, "flu" symptoms, etc.

My symptoms built up over time, it was gradual and slow for many years but then hit hard and fast.

The "hallmark" of lyme disease is that it is a multi-system illness - meaning you will have joint symptoms, GI symptoms, respiratory symptoms, neuro symptoms.

AND that the symptoms come and go. They cycle. Usually in a 4-6 week cycle.




allheart said:


> Marj, you are 1000% right. Not sure if I fully recovered or was reinfected, I really don't think I was reinfected. I am so sorry for your former friends. Right now it is down to pain in the legs and real bad in the left knee, but that's how it started the first time.
> 
> My thing is, if it's gonna stay, stay, don't play this game of leave and come back. And I know, after the lymes there can be permanent nureolgical damage. My thinking and memory is not quite all back yet, they say that is the last to come back.


A 4 week cycle of antibiotics is not enough. You should be on antibiotics (for an early infection - just bitten) until you are symptom free for 4 weeks. So this could be 6 weeks or 8 weeks or 12 weeks. If you stop while you still have symptoms, or stop too soon after the symptoms stop the Lyme will come back.

Lyme is very smart and very tricky. It will "morph" into different forms and hide until antibiotics stop, and then it comes out again.

Please find an LLMD. Not an infectious disease doctor. You need someone who will follow the ILADS guidelines and not the IDSA.

Hulu is playing Under Our Skin for free right now. It is a documentary about Lyme Disease. Would be helpful to watch it.

I feel like I'm rambling.  So will stop. Hope this wasn't too long.

:grouphug: Hugs and prayers,

Tori


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## Grace'sMom (Feb 22, 2012)

Wanted to add that dogs do know when something is wrong or we aren't feeling well.

One lady on the Lyme Forum I am a part of said her doctor started testing for everything when she told him her lab suddenly became clingy. Dogs know.

Gus knows when I am going to get a pain flare. He will wake me up so I can take meds or get an ice pack. He will also wake me up if I sleep through my alarm for my morning meds.... Bless him :innocent: :wub: Couldn't do this without my pups.


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## spookiesmom (Mar 28, 2010)

Isn't there a special blood test that needs to be done by a specfic lab? In Calif? I knew it was a real bear to treat, and it really makes you feel crappy. Thank you for sharing this.


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## Grace'sMom (Feb 22, 2012)

Sadly testing for Lyme Disease and all coinfections is unreliable.

If someone has a Chronic infection, often times their immune systems are so overloaded with the illness that it doesn't show up on the tests as positive. Or the test only tests for a few specific strains. 

For example the test for Babesia only uses 2 strains out of the hundreds that could infect humans. So if you test negative for Babesia, that doesn't mean anything because they only have testing for those 2 strains.

Many LLMDs will make a clinical diagnosis, but will also look at other tests - there are very specific cells that can be tested to look for certain ranges.

But a lot of people will do a "trial" of treatment and then retest and all their tests come back positive.

The best labs, though, are in California. There is another in AZ, and one more that I'm not sure where it is. They are labs that specifically test for tick borne illnesses.

If you are ever bitten and can save the tick (in a jar with rubbing alcohol or in a zip baggie in the freezer) you can mail them your tick and they can do testing on it.


And - as important as this information is for people, it is also important to make sure our dogs are protected. Many people get infected because their pets carry in the ticks. It is also dangerous for pets, and can be just as difficult to treat.


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## Rocky's Mom (Apr 10, 2010)

Christine, I used to live in the Northeast, but now that we live in the southwest part of the country, I don't hear much about it, so I really don't know a lot about it. I hope you get to see a specialist soon, if you didn't already. Sending up prayers for you that it is mild and you will be feeling well again soon.:wub2:


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## hoaloha (Jan 27, 2012)

Christine, we don't have many tick-borne illnesses in Cali, but I just wanted to let you know that I'll pray and send over good thoughts to you ( and Tori too!). ::hug:: remember, you are your own best health advocate so don't be afraid to ask your doc questions and get second opinions as needed .


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## edelweiss (Apr 23, 2010)

Sorry Grace's Mom not to hi-jack your thread but:
I have posted this before but will post it again in the event of new members.
My Kitzel was bitten by 2 ticks in April of 2010 (he was staying w/a friend & at her summer home in northern Greece). She did not tell me about it.
Shortly thereafter he became very ill---he was sleeping in my bed so I know exactly when it happened. I took him to the vet the next day and of course he acted normal when we were there. After we left he vomited. That night he was also very sick again. I mentioned it to my friend as it was very strange. She told me that she had taken 2 ticks off him & exactly when it had happened. I counted the days & it was 10 so I called the vet to ask that she do a blood test for tick borne disease. She wasn't keen on it but said if I felt strongly about it she would do it---she said it was too early to show up that the body had developed antibodies to it. I insisted on "wasting my money" and it came back very positive! She was amazed & immediately started antibiotics for a month. He was later retested & found to be "clean." 
IF caught early enough & treated aggressively tick-borne disease in animals can be stopped---it is all in the timing & treatment. Owners MUST be vigilant!
:back2topic:


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## edelweiss (Apr 23, 2010)

Tori, I am so sorry to read all this. My own, youngest, daughter has Epstein Barr & suffers from a mosquito borne disease from Africa that cycles in her system so I know a bit about what you are facing. It can put her out of commission completely for a good long time (months), even doctors in the US don't know how to help her and it will probably be a life-long illness. My heart knows how incapacitating it can be. Thank you for taking your time and energy to tell your story w/the hope that someone else will benefit from your hard earned knowledge.:wub:


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## allheart (Oct 3, 2008)

Grace'sMom said:


> Hi,
> 
> I do have Chronic Lyme Disease & Chronic Tick Borne Illness. I'm happy to talk about it with anyone any time. Just about anyone who has Chronic Lyme is on a mission to educate as many people as possible.
> 
> ...





Grace'sMom said:


> Wanted to add that dogs do know when something is wrong or we aren't feeling well.
> 
> One lady on the Lyme Forum I am a part of said her doctor started testing for everything when she told him her lab suddenly became clingy. Dogs know.
> 
> Gus knows when I am going to get a pain flare. He will wake me up so I can take meds or get an ice pack. He will also wake me up if I sleep through my alarm for my morning meds.... Bless him :innocent: :wub: Couldn't do this without my pups.


Tori, oh my goodness how can I ever ever thank you. There just are no words. With all my heart, with all my soul, THANK YOU. I am so sorry you have been battling this for so long, I just want to hug you. Your post has helped me immensely and I know it will help so many others. I know it will. It too frequently gets undiagnosed, and then becomes chronic, just like in your case. Tori, I love you, I truly do.

Tori, I cringe to tell you this, I didn't get your private mesdsage, I am so sorry. So deeply sorry. I will clean it out and give you my e-mail address. If your box isn't saved up for sent messages (mine isn't I never it up), don't worry about having to write all of it over again, but PLEASE write to me. You have given me such a gift.

Whoever pointed me to Tori, THANK YOU. As Tori, will attest, brain fog and memory, are one of the things, in my opinion really attacked. But I will PM the person when I look back on the thread to thank them.

Tori, I was hit with hit this time last year. No bullseye rash. So I had no idea. But I do beleive I got it over my BIL's as I posted earlier, he has nothing but deer in his back, and I was cradling Chloe the whole time I was there, as she likes to come to me, when there is a houseful of people. She is a Jack Russel and I love her dearly. At the time, Chloe was not diagnosed, but I did notice she was loosing weight. I let my BIL know that I think Chole is loosing weight. Nah, she's okay :angry:

I too, am writing this publicly in hopes to help others. Last year, I got flu like symptoms, and oh my word the pain. So I did go to the docs eventually, got blood work done, and I think the lymes is the last to come in. So my primary doc, prior to receiving that result, just said, oh you have fribromalga (sp). Gave me some medicine that I think begins with an L, I read all about the mediciine :w00t: and thought this is crazy, noooo, this doesn't sound right. Then I get a call, about 3 weeks later by the docs office you have lymes disease. God help you, if you don't have a rash, makes the Primary Doc, even that much more confinced it is something else.

Anyway a round of antibiotics 3 weeks, and I was fine. Oh my word this go around, whamo, did it hit. Additional symptoms, severe headaches for at least 6 to 8 weeks, numbness, and pain in joints, complete brain fog. That's what really got me, this time is so much harder and taking that much longer to go away. I did look up lyme literate Docs, and it lead me to the infectious disease facility. I was trying to stay in my local area, but forget that now, I will go back and look for a lyme literate doc, regardless as to where they are. I thought another round of antibiotics for 4 weeks, just wasn't the right treatment. Anyway, thank you SO much.

About dear Chole, it is killing me, as know she is having kidney problems . 

Once again, I can not thank you enough, I will send you my e-mail address, if you don't mind, and you were not rambling at all, it truly is so helpful. THANK YOU 1000x over. I am soooooooooo sorry, the stage that you are in, and you are so right, our furbabies know. It's a sin, but I always try and convince them, Mommy is okay. 

I have to take care of my MIL, so all of this is just not going to work. We could have nurses come in, but she wants nothing to do with that. 

Thank you so much again, I am so sorry, the e-mail did not go through, but as I said, I will clean it up and send you my e-mail address. 

I once again am so sorry for all that you have been through and are still going through. I will also look up a lyme literate doctor. Tori, THANK YOU. I was so hesitant to post this, thinking oh I can get through this, I did last time, but I am so glad I did. Once again, THANK YOU. 



spookiesmom said:


> Isn't there a special blood test that needs to be done by a specfic lab? In Calif? I knew it was a real bear to treat, and it really makes you feel crappy. Thank you for sharing this.





Grace'sMom said:


> Sadly testing for Lyme Disease and all coinfections is unreliable.
> 
> If someone has a Chronic infection, often times their immune systems are so overloaded with the illness that it doesn't show up on the tests as positive. Or the test only tests for a few specific strains.
> 
> ...


Bingo Tori.



Rocky's Mom said:


> Christine, I used to live in the Northeast, but now that we live in the southwest part of the country, I don't hear much about it, so I really don't know a lot about it. I hope you get to see a specialist soon, if you didn't already. Sending up prayers for you that it is mild and you will be feeling well again soon.:wub2:


Oh thank you so much, that is so sweet and I really appreciate it. 



hoaloha said:


> Christine, we don't have many tick-borne illnesses in Cali, but I just wanted to let you know that I'll pray and send over good thoughts to you ( and Tori too!). ::hug:: remember, you are your own best health advocate so don't be afraid to ask your doc questions and get second opinions as needed .


Thank you so much for your support. And you are so right, you have to be an advocate, ask questions, and not just accept what Primary Docs, say. I do really like my Primary doc, but certianly didn't feel comfortable with what he was saying. We had a little "discussion". But as Tori, pointed out, I most definetly now, need a specialst. Thank you once again for your support for both Tori and I. hugs.



edelweiss said:


> Sorry Grace's Mom not to hi-jack your thread but:
> I have posted this before but will post it again in the event of new members.
> My Kitzel was bitten by 2 ticks in April of 2010 (he was staying w/a friend & at her summer home in northern Greece). She did not tell me about it.
> Shortly thereafter he became very ill---he was sleeping in my bed so I know exactly when it happened. I took him to the vet the next day and of course he acted normal when we were there. After we left he vomited. That night he was also very sick again. I mentioned it to my friend as it was very strange. She told me that she had taken 2 ticks off him & exactly when it had happened. I counted the days & it was 10 so I called the vet to ask that she do a blood test for tick borne disease. She wasn't keen on it but said if I felt strongly about it she would do it---she said it was too early to show up that the body had developed antibodies to it. I insisted on "wasting my money" and it came back very positive! She was amazed & immediately started antibiotics for a month. He was later retested & found to be "clean."
> ...


Sandi you are so right, and thank God you were persistant with Kitzel, once again, we have to be and should be. So glad Kitzel is okay and good for you. Hugs.



edelweiss said:


> Tori, I am so sorry to read all this. My own, youngest, daughter has Epstein Barr & suffers from a mosquito borne disease from Africa that cycles in her system so I know a bit about what you are facing. It can put her out of commission completely for a good long time (months), even doctors in the US don't know how to help her and it will probably be a life-long illness. My heart knows how incapacitating it can be. *Thank you for taking your time and energy to tell your story w/the hope that someone else will benefit from your hard earned knowledge.:wub:*




Oh Sandi, you I am so sorry, about your daughter, and you are so right, how greatful I am to Tori.

Thank you everyone so much. It is so appreciated. Thank you dear Tori,
Christine.


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## edelweiss (Apr 23, 2010)

edelweiss said:


> Sorry Grace's Mom not to hi-jack your thread but:
> I have posted this before but will post it again in the event of new members.
> My Kitzel was bitten by 2 ticks in April of 2010 (he was staying w/a friend & at her summer home in northern Greece). She did not tell me about it.
> Shortly thereafter he became very ill---he was sleeping in my bed so I know exactly when it happened. I took him to the vet the next day and of course he acted normal when we were there. After we left he vomited. That night he was also very sick again. I mentioned it to my friend as it was very strange. She told me that she had taken 2 ticks off him & exactly when it had happened. I counted the days & it was 10 so I called the vet to ask that she do a blood test for tick borne disease. She wasn't keen on it but said if I felt strongly about it she would do it---she said it was too early to show up that the body had developed antibodies to it. I insisted on "wasting my money" and it came back very positive! She was amazed & immediately started antibiotics for a month. He was later retested & found to be "clean."
> ...


Kitzel *did not* have Lyme disease---he had *Ehlichiosis.*


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## allheart (Oct 3, 2008)

edelweiss said:


> Kitzel *did not* have Lyme disease---he had *Ehlichiosis.*


 
I'm sorry, I misread. Please I meant no harm.


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## edelweiss (Apr 23, 2010)

Christine, I am just now reading this and honestly have no idea what you are talking about. I did PM you just now before looking at this, and in all honesty still don't understand. My post was simply to warn people to be on the look out for tick-borne diseases of ALL kinds, not just Lyme. 
I do hope you are okay. I am so sorry for your illness.


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## aprilb (Jul 9, 2010)

Oh my gosh, you have Lyme's? I'm so sorry. It can take a long time to get rid of. I have a friend who has been struggling with it for 3 years. You may need to take several rounds of antibiotics. I hope you feel better.:grouphug::wub:


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## Grace'sMom (Feb 22, 2012)

hoaloha said:


> Christine, we don't have many tick-borne illnesses in Cali, but I just wanted to let you know that I'll pray and send over good thoughts to you ( and Tori too!). ::hug:: remember, you are your own best health advocate so don't be afraid to ask your doc questions and get second opinions as needed .



This is a common misconception. There is Lyme Disease in every state.

Here is a map of California:

Lyme Risk Map of California

The best prevention is to get in the habit of doing tick checks on your and your family (fluffs of course!), especially after going to a park or hiking - anywhere that has trees or grass (I know that is a lot). Or to shower when you come in.


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## Grace'sMom (Feb 22, 2012)

edelweiss said:


> Sorry Grace's Mom not to hi-jack your thread but:
> I have posted this before but will post it again in the event of new members.
> My Kitzel was bitten by 2 ticks in April of 2010 (he was staying w/a friend & at her summer home in northern Greece). She did not tell me about it.
> Shortly thereafter he became very ill---he was sleeping in my bed so I know exactly when it happened. I took him to the vet the next day and of course he acted normal when we were there. After we left he vomited. That night he was also very sick again. I mentioned it to my friend as it was very strange. She told me that she had taken 2 ticks off him & exactly when it had happened. I counted the days & it was 10 so I called the vet to ask that she do a blood test for tick borne disease. She wasn't keen on it but said if I felt strongly about it she would do it---she said it was too early to show up that the body had developed antibodies to it. I insisted on "wasting my money" and it came back very positive! She was amazed & immediately started antibiotics for a month. He was later retested & found to be "clean."
> ...


:grouphug: So happy Kitzel is better.

It is sad to say but the tests for our pets are more reliable then for humans, and even though some may be resistant to test right away - ALL vets know about lyme and tick borne illness.

Sadly the average general practitioner knows nothing about Lyme, or only what the CDC/IDSA says about Lyme.

But I'm very glad Kitzel made it through and got proper treatment


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## Snowball Pie's Mommi (Oct 16, 2008)

Grace'sMom said:


> Hi,
> 
> I do have Chronic Lyme Disease & Chronic Tick Borne Illness. I'm happy to talk about it with anyone any time. Just about anyone who has Chronic Lyme is on a mission to educate as many people as possible.
> 
> ...


Christine, I think Tori's post is excellent. You really do need to consult with a Lyme specialist. In addition to my MS and fibromyalgia, I has been suspected of having Lyme's. I was referred to a doctor who specializes in Lyme's and have learned so much ... it can mimic all of the many many symptoms of MS, and visa 
versa. So, you need a specialist who knows the ins and outs of this tricky and debilitating disease. If not treated properly, it can lead to further damage to your body and it's organs. 

I am so sorry you are going through this, Christine. I pray you find the right doctor who will work with you and have you on the right track to feeling better real soon.


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## Grace'sMom (Feb 22, 2012)

edelweiss said:


> Tori, I am so sorry to read all this. My own, youngest, daughter has Epstein Barr & suffers from a mosquito borne disease from Africa that cycles in her system so I know a bit about what you are facing. It can put her out of commission completely for a good long time (months), even doctors in the US don't know how to help her and it will probably be a life-long illness. My heart knows how incapacitating it can be. Thank you for taking your time and energy to tell your story w/the hope that someone else will benefit from your hard earned knowledge.:wub:


*I'm sorry to hear about your daughter. I will put her into my prayer list. I watch my parents watch me battle this illness every day. So I know how hard it is on parents... :wub: Sending lots of love and comforting vibes.*



allheart said:


> Whoever pointed me to Tori, THANK YOU. As Tori, will attest, brain fog and memory, are one of the things, in my opinion really attacked.


*We call it "Lyme Brain" and it is a well known term in my house, and now often joked about LOL*



allheart said:


> Tori, I was hit with hit this time last year. No bullseye rash. So I had no idea.
> 
> Last year, I got flu like symptoms, and oh my word the pain. So I did go to the docs eventually, got blood work done, and I think the lymes is the last to come in. So my primary doc, prior to receiving that result, just said, oh you have fribromalga (sp). Gave me some medicine that I think begins with an L, I read all about the mediciine :w00t: and thought this is crazy, noooo, this doesn't sound right. Then I get a call, about 3 weeks later by the docs office you have lymes disease. God help you, if you don't have a rash, makes the Primary Doc, even that much more confinced it is something else.
> 
> Anyway a round of antibiotics 3 weeks, and I was fine. Oh my word this go around, whamo, did it hit. Additional symptoms, severe headaches for at least 6 to 8 weeks, numbness, and pain in joints, complete brain fog. That's what really got me, this time is so much harder and taking that much longer to go away. I did look up lyme literate Docs, and it lead me to the infectious disease facility. I was trying to stay in my local area, but forget that now, I will go back and look for a lyme literate doc, regardless as to where they are. I thought another round of antibiotics for 4 weeks, just wasn't the right treatment. Anyway, thank you SO much.


*That is another "myth" - Not everyone who is bitten and contracts Lyme will get the bullseye rash. Fewer then half will ever remember being bitten or having a tick on themselves. And less then half will ever get a bullseye rash.

BUT Even if you get a clear bullseye rash - most GPs will still argue with you that you DO NOT have Lyme disease! It is insane.

By the time the tests show a positive, you have been infected too long. If you go in right after being bitten, removed the tick yourself, have the rash - doc tests you - chases are still not very good that you will get a positive.

BUT if you go back and are retested a few weeks later (by the time it is too late) you will get a positive.

For someone like me who has had it for decades - my tests were negative until we did a "trial" course of antibiotics, then it came back 200% positive! No doubt.

Sadly, Christine, I'd guess you have a chronic case that was not properly treated early on.

Often times when people are initially sick after being bitten and go on antibiotics - they will feel better. This is usually because the Lyme will go into hiding. But if it isn't long enough, and the symptoms "return" after a few weeks, months, or even years - it is not a new infection, it is the old infection "awakening".

So please do find an LLMD. If you are dealing with a chronic infection that started last year (knowing that is when you were bitten) you have a really good chance of successful remission 
*



allheart said:


> About dear Chole, it is killing me, as know she is having kidney problems .
> 
> I have to take care of my MIL, so all of this is just not going to work. We could have nurses come in, but she wants nothing to do with that.


*You may need to retalk bringing in help for her. Maybe if you are in the same room and supervise it all.

Not everyone gets debilitated with Lyme. That is one of the reasons why it is so difficult to understand. Because Lyme attacks everyone's body in a different way.

BUT you will have very hard days with treatment, and will need to take care of you. 

hugs and blessings to all.

T
*


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## Grace'sMom (Feb 22, 2012)

edelweiss said:


> My post was simply to warn people to be on the look out for tick-borne diseases of ALL kinds, not just Lyme.
> I do hope you are okay. I am so sorry for your illness.


This is important.

Most of us with Chronic Lyme do have Lyme, but our "main" infections are co-infections - Bartonella, Babesia, Ehrlichiosis, Mycoplasma, etc, etc, etc.

All of these have potential to become chronic, or some of them will kill if left untreated.


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## edelweiss (Apr 23, 2010)

I really think some of this should be posted in a sticky under Maltese Health---so many don't realize how very serious a tick bite can be!


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## allheart (Oct 3, 2008)

edelweiss said:


> Christine, I am just now reading this and honestly have no idea what you are talking about. I did PM you just now before looking at this, and in all honesty still don't understand. My post was simply to warn people to be on the look out for tick-borne diseases of ALL kinds, not just Lyme.
> I do hope you are okay. I am so sorry for your illness.


Thanks Sandi, I so see what you mean now, and you are very right. Thank you.



aprilb said:


> Oh my gosh, you have Lyme's? I'm so sorry. It can take a long time to get rid of. I have a friend who has been struggling with it for 3 years. You may need to take several rounds of antibiotics. I hope you feel better.:grouphug::wub:


Thanks April so much.



Grace'sMom said:


> :grouphug: So happy Kitzel is better.
> 
> *It is sad to say but the tests for our pets are more reliable then for humans, and even though some may be resistant to test right away - ALL vets know about lyme and tick borne illness.*
> 
> ...


This is so true. I think alot of times, I so much would rather my vet take care and do testing of me than a human doctor. Sorry, no offense to human doctors, but Tori is so right.





Snowball Pie's Mommi said:


> Christine, I think Tori's post is excellent. You really do need to consult with a Lyme specialist. In addition to my MS and fibromyalgia, I has been suspected of having Lyme's. I was referred to a doctor who specializes in Lyme's and have learned so much ... it can mimic all of the many many symptoms of MS, and visa
> versa. So, you need a specialist who knows the ins and outs of this tricky and debilitating disease. If not treated properly, it can lead to further damage to your body and it's organs.
> 
> I am so sorry you are going through this, Christine. I pray you find the right doctor who will work with you and have you on the right track to feeling better real soon.


*Marie, bless you and you are always complete sunshine. You are so right, the longer I don't get in the right hands, the worse damage can be done. Thank you so much Marie.*



Grace'sMom said:


> *I'm sorry to hear about your daughter. I will put her into my prayer list. I watch my parents watch me battle this illness every day. So I know how hard it is on parents... :wub: Sending lots of love and comforting vibes.*
> 
> 
> 
> ...





Grace'sMom said:


> This is important.
> 
> Most of us with Chronic Lyme do have Lyme, but our "main" infections are co-infections - Bartonella, Babesia, Ehrlichiosis, Mycoplasma, etc, etc, etc.
> 
> All of these have potential to become chronic, or some of them will kill if left untreated.





edelweiss said:


> I really think some of this should be posted in a sticky under Maltese Health---so many don't realize how very serious a tick bite can be!


 
*Sandi, I couldn't agree more. The information Tori has provided is so valuable.*

Thank you all so much bless all of you and off I go, trying to find a LLMD.

Huge hugs.

Christine.


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## Grace'sMom (Feb 22, 2012)

Christine - I emailed you the link to the Lyme Forum. You can post in teh Doctor Request forum and a leader will send you a list of LLMDs in your area.

Marie - I'm glad you saw a specialist. MS and Fibro are common misdiagnosis of Lyme, especially in women. I hope your treatments are helping your MS. 

Sandi - Most people don't know about ticks. They know the "myths" - ticks are only back East, ticks are rare, lyme is rare, lyme is easy to treat.

One tick the size of a poppy seed can carry dozens of illnesses.


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## edelweiss (Apr 23, 2010)

A few yrs. ago a young American couple were visiting here in Greece from Russia---sort of a 2nd honeymoon---I noticed in the kitchen that she had a bulls-eye on her leg & asked her if she had been in the woods, forest or ? lately. She was surprised & answered "yes, just before we came w/our baby on a picnic." We got her into a specialist here the next day & she was tested & treated for Lymes disease. She called back to her caregiver for the baby & had her tested as well. I am so grateful that we caught it so early! I feel education in regard to people & fluffs is the only way to keep us healthy---and even that is not a guarantee!
Again, Tori, I appreciate your information/story/advice.


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## allheart (Oct 3, 2008)

Grace'sMom said:


> Christine - I emailed you the link to the Lyme Forum. You can post in teh Doctor Request forum and a leader will send you a list of LLMDs in your area.
> 
> Marie - I'm glad you saw a specialist. MS and Fibro are common misdiagnosis of Lyme, especially in women. I hope your treatments are helping your MS.
> 
> ...


Oh my gosh Tori, you are amazing. The fourum is so nice and the movie is absolutely incredible. I think it would be amazing to post here.

Tori, you are truly an angel sent from above.

Thank you so much.

Christine


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## Maidto2Maltese (Oct 19, 2004)

I saw this while at work today but didn't have time to post.

I got Lyme last June... I have to say I am a bit surprised I hadn't gotten it sooner with ticks being so bad and I've taken loads of them off me over the 30+ years of gardening. I've had tests every so often just as a precaution... all came up neg until I got a tick off and within hours had a bullseye and it expanded rapidly! 

My initial symptoms were not as bad as many get but the overwhelming fatigue was a totally new experience to me... and though usually a stomach of 'iron' the doxy got to me at about starting the 3rd week.

I have a sort of problem decifering what 'aches and pains' I now have are related to Lyme or what are from already existing injuries I've done to myself. I do know some of the problem areas can move around from day to day or week to week...with one area subdiding and a new area causing problems. 

I do know the last several weeks I've had more flare up of my injured shoulder acting up as well as my knees and back. I guess I'll have to go to get more evaluation to see what's going on. I will say I feel 'decent' energy wise...meaning I don't have the fatigue but just kind of 'hurt'.

Our area is having much increased incidents of the other tick-borne diseases as well and the little 'beasties' are out and about already! I took one off Naddie's head... just walking , had not yet attached. She had only been out less than 5 minutes to potty and she only brushed by the one garden of dead weeds. 

Lyme has been in the area for many years now and what I'm seeing is there is the 'secondary' diseases that are related to Lyme anyway.. most in some way an autoimmune disease. Lots of Ebtein Barr, Lupus, Fibromyalsia ( sp?) Rhumatoid Arthritis, to be the more common. Many others developed chronic headaches and sinus infections that they never had before the Lyme.

I think I can dare say there is nobody I know that has not been affected by Lyme.... either themselves or a close family member has had it dx.


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## hoaloha (Jan 27, 2012)

Grace'sMom said:


> This is a common misconception. There is Lyme Disease in every state.
> 
> Here is a map of California:
> 
> ...



Sorry for the mis-type! I meant that we don't see as many cases of Lyme disease where I live in Cali as compared to the East coast so i do not know many people affected by it around here. However, I have seen many patients and a few friends affected by arboviral illnesses and rickettsial disease like typhus. Just like TB is rampant over here but not so much in other parts of the US. 

I totally agree that tick checks are a MUST for family and pups even in lower incidence areas. VEry Very important!!!

I agree that the diagnosis is many times difficult to make and optimizing treatment even more difficult- that is why I am a huge advocate that each person is in charge of his/her own health and a good physician will support whatever is in the best interest of the patient . thanks for sharing your experience! This forum is wonderful


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## allheart (Oct 3, 2008)

Maidto2Maltese said:


> I saw this while at work today but didn't have time to post.
> 
> I got Lyme last June... I have to say I am a bit surprised I hadn't gotten it sooner with ticks being so bad and I've taken loads of them off me over the 30+ years of gardening. I've had tests every so often just as a precaution... all came up neg until I got a tick off and within hours had a bullseye and it expanded rapidly!
> 
> ...


 
Bless your heart, and thank you so much for sharing, I and I am sure so many others appreciate it. Paula, since the aches are acting up again, I will definetly get it rechecked. Hugs to you. 

The first go around, all I had was pain, started in one knee, that on my heaves all over. This go around, the sinus headaches that just would not go away, every day for 6 -8 weeks, pain, numbness. 

I too have just leanred that with lyme it can caue underling illnesses. 

I just am floored at the medical community (most, but not all), that either blow it off completey, and immediately diagnois it at fibra whatever it's called ( I just can't embrace that, as it seems when some docs don't know, that is there diagnosis, but that is just my thoughts. )

Here is an amazing documentary, completely amazing, that Gracie's Mom shared with me. It is so worth watching it. Hugs and love to you.

http://www.hulu.com/watch/268761/under-our-skin

Thank you Grace's Mom for sharing this with me.


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## edelweiss (Apr 23, 2010)

Tried to view it but says it is not available outside US?


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## allheart (Oct 3, 2008)

edelweiss said:


> Tried to view it but says it is not available outside US?


 
Oh no Sandi  I'm not sure. Let me check the link. Maybe I posted it wrong. Hang on.


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## allheart (Oct 3, 2008)

allheart said:


> Oh no Sandi  I'm not sure. Let me check the link. Maybe I posted it wrong. Hang on.


 
Sandi, it is working, when I clicked on it. Try looking up the below. Please let me know if you can get it or not. It is so worth the watch. Hugs. It may also be listed as a "movie". I hope you can get it.


Hulu - "Under our Skin" 2009 Here is the documenatry information:

TitleUnder Our Skin (2009)Runtime1 hr. 44 min.StudioGravitasGenres*News and Information*DescriptionExposes the hidden epidemic of Lyme disease and reveals how our corrupt health care system is failing to address one of the most serious illnesses of our time.


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## allheart (Oct 3, 2008)

*UPDATE UPDATE UPDATE . *Hubby took himself today straight to my docs office, who we do really like, but he just wasn't getting it. Hubby told him, doc, come on, she can barely walk now, and the other symptoms I am having. It was only THEN, that the doc got it, and was very concerned. And said, it does get worse before it gets better. I will continue with my 4 weeks of antibiotics as well as an antiinflamatory, and then we will take it from there. Gracie's Mom, thank you so much for everything and all the extra advice, I can not thank you enough. And to all o you, THANK YOU from the bottom of my heart. Sooo I guess this is the worst of it, and soon enough, I do beleive, I will move to the next stage, which will be a whole lot better.

At least FINALLY, my primary gets it. But of course, a specialist may be needed as well.

I am sure Gracie's Mom will agree with me, I don't want one person to ever ever ever, be misdiagnosed. Don't give up, and if what they say doesn't feel right, then push until you get to the right hands.

Thank you all so much for being there.

Many hugs,

Christine


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## Rocky's Mom (Apr 10, 2010)

Sweet Christine, I am praying you feel better soon, I hate to hear you are still feeling ill. Take care and good for your hubby!! But your doctor needs to listen to YOU. :grouphug:


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