Jump to content

To All You Lyme's On Here


dizzygirl
 Share

Recommended Posts

Hey folks.. my dad was started on lyme anti biotics..on thursday... they are making him feel quite sick...if i understand correctly this can be normal am i right? espcially if they anti-biotics are killing off the tick crap in your body? Uhm his dr is treating him for lyme disease.. my dad has been really sick for over a yr now.. and knows roughly when he got tick bit... about 14-15 months ago...

uhm his dr is treating him but has no real knowledge of lyme.. and wouldnt treat him or do anything until my mom really got on the dr to DO SOMETHING! so he put my dad on 8 wks of anti-biotics.. but ive been doing alot of reading on it.. and trying to find my dad a tick literate dr...and im not having a great deal of luck...

im concerned that after 8 weeks on anti biotics that that is all his pcp may do b/c he is not familar much with lyme.. and my dad is very sick..

his blood work came back showing that his blood test for lymew was neg.... but those things are conclusive anyways.. and that he has very very low tyroid functioning...(he was started on synthroid.. and the dose was uped and he kept getting sicker.. so now on to lyme treatmen) his labs also showed high good/bad cholesterol...and that his inflammation rate in his (im guessing muscle inflamation) is extremely high.. his pcp told him that it is the highest inflamamtion rate he has ever seen...

its my understanding that lyme can mimick thyroid disease? so could that be why the thyroid medication has not touched/help increase his thyroid functioning...

i guess it all comes down to im really scared for him.. he has been unable to work cause he's been sick there for he has no insurance.. my parent filed some emergency help.. but sincemy mom works.. im afraid they will get denied for him and just miss the cut off guidelines...

my dad has gone from being a very very active and energetic.. relatively healthy man.(the enrgizer bunny to be exact.. he could keep going and going and going!). to being very sick.. and having to lay down in the middle of the day.. i think he now has some autonomic dysfunction.. he has symptoms of dysuatonomia.. but can not get test right now ..again.. no insurance...you can tell he isnt well by looking at him

i guess im looking for information and helpful tips from those of you who suffer with lyme disease.. are there any non medical things that you do that help ease your misery??

some of the bizarre symptoms he's having..

-his gums are receeading

-severe debilitating fatigue

-extreme muscle pain/spasms

-palsm and souls or his hands and feet sweat

-major heat intolerance

-chest pain

-visual disturbacnes

-he feels like he's dying

-irrigeular hr beats

-really dry skin

-dizziness/feeling like about to faint

-lumps appearing along his muscles

-swollen glands/lymph nodes

-unable to swallow

-choking

uhm there are more but these are the ones that stand out to me right now.. any tips of dealing relieveing these would be helpful..

my goodness my heart goes out to all of you with lyme and dysautonomia..my goodness i dont know you all do it...

what other tests have you had doe.. to test and see what kind of damage the lyme has done to your body???

again any help and insight would be wonderful... im really scared for my dad...

thanks

Link to comment
Share on other sites

Hi Dizz,

I wish I could help you with this. I don't know much about lyme, though. I'm so sorry to hear that your dad is so sick. I hope that he is able to find a good doctor. It must be really hard to watch him suffer so much.

Thinking of you, your dad, and your family.

Rachel

Link to comment
Share on other sites

I don't have any experience with Lyme. I hope your dad gets a diagnosis and improves soon. It sounds scary. I guess they are thinking Lyme because no other tests are positive? As I am sure you know dysautonomia runs in families, so if you have it, it might not be too surprising for your dad to develop it as well?

Link to comment
Share on other sites

Linda,

From your post it sounds as if your dad DOES have memory of a tick bite. Am I reading that correctly? Can he link beginning to feel sick some time close to after receiving the tick bite? Or a bout of fatigue, flu-like symptoms, a 'summer flu', achey joints, etc?

I doubt that eight weeks of abx would be enough to treat Lyme if he has had it for over a year.

And, YES it is normal to feel much, much worse when you start the abx. Some people take that as a sign that a person actually does have lyme b/c they become so sick from the abx.

Do you know what abx he is taking?

Anyways, the basic lab tests are inconclusive and rarely detect lyme, especially chronic lyme. They pick up a lot of false negatives as well as false positives.

There are several Lyme associations in Pennsylvania and they will refer you to a Lyme physician in or near your area of the state or to nearby states you are willing to travel. You just need to google Lyme and Pennsylvania and contact them directly for a referral.

I hope you are able to find some answers soon.

Emily

Link to comment
Share on other sites

Guest tearose

Oh my, this sounds very difficult.

Lyme treatments are so controversial too.

Personally, I did six weeks on IV for lyme. It was simply all my body could tolerate. I was ill for nine months before IV and then did the IV. I had a rough time on IV, some days were good and I also got worse. I want to believe and do think that my lyme is gone and still today I have permanent damage. I got and still have left sided lymphedema. I only showed one borderline positive test for lyme and my lyme literate doc and I decided to aggressively treat me.

It is a very difficult disease to diagnosis and sometimes the treatments can be worse than the disease symptoms. It is a very personal decision to discuss with his physician. My dear girlfriend chose to go further on antibiotics and for longer. Then she tried gamma-globulin...nothing worked...she has since passed away. This is surely a worst case scenario. I am struggling with Lymphedema and POTS but I am still here.

I do have some bitterness and some mixed feelings. I wish there was more cut and dry information but there is just not enough information.

Keep looking for answers. Have you consulted with a top notch medical team? This is the time to go for the best doctors!!!

I will keep your dad in my prayers.

best regards,

tearose

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...