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james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 6/18/2009 6:52 AM (GMT -6)   
where do i start...

dizzy/light headed
shaky/anxious
back pain, chest pain
rash on chest
dry cough
floating spots in vision
loss of weight
waking up early for no reason
muscles twitching
night sweats
pain that moves around body
heart racing
hangover feeling/tired all day

symptoms started on may 4th, EM rash showed up on may 27th. Haven't felt the same since. been on doxy for 2 weeks now.. they only gave me 3 weeks of treatment, i feel like i need more though.

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 6/18/2009 8:48 AM (GMT -6)   
You need to find a Lyme literate doctor. 3 weeks of doxy is not going to cut it. That is what the ID specialist gave me last summer. I didn't improve. I then found a doctor that knew how to treat Lyme and I am about 60% improved. I also went 15 months with no diagnosis so you are probably in better shape than I was.

I had all of the symptoms you listed. Isn't lyme just wonderful? Maybe someone here can help you find a doctor. You just need to let them know what state you are in and how far you would travel. I wouldn't wait. Good luck!!!

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 6/18/2009 8:52 AM (GMT -6)   
Sorry James..just realized you are from Missouri. Start a new post "need LLMD in Missouri"

gorbybelle
Regular Member


Date Joined May 2009
Total Posts : 147
   Posted 6/18/2009 9:29 AM (GMT -6)   
no - 3 weeks is not enough - more like 3 to 6 months - possibly longer - find an LLMD - that is the best thing you could do for yourself

Best Wishes

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 6/18/2009 9:32 AM (GMT -6)   
James, Lyme is so manageable and maybe even curable in the early stages like you are in. I cannot stress this enough............ Please find a doctor who knows about lyme and will treat you for a minimum of 6 weeks or longer till you have no symptoms left. If not you may surely be screwed for life like many of us on this forum are. It will be worth it to pay out of pocket to see a LLMD or you could be paying for many years to come.Blessings
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties. [/color]

<FONT color=#0000ff>Outstare The Darkness--The Light Will Come!


james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 6/18/2009 10:27 AM (GMT -6)   
well i just came back from the vet to have my dog checked for lyme and the test came back negative. the test is 95% accurate. so that made me feel better.

it literally feels like i've been hit with a mac truck that just keeps on hitting me.

my Vet (which i graduated with from high school) told me, "james, do you remember ted richxx) i said yeah, he said he has lyme. From the same town in missouri, very small town also. So i know its here. Apparently we could have a lethal strain here. I guess Ted within a month from walking around to being in a wheelchair. But he finally figured it out, and did IV treatment and rehab and is back at work.. i need to get a hold of him and find out what doc he used.

pj1954
Regular Member


Date Joined Feb 2008
Total Posts : 57
   Posted 6/18/2009 3:24 PM (GMT -6)   
I agree with minerals get to an llmd asap its totally curable if you get to it early on I know of a few that caught it early and now have no more symptoms because they found a great llmd.


the longer you wait the harder it gets

james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 6/18/2009 3:41 PM (GMT -6)   
after i find their phone numbers i will give them a call.

is it weird not to get headaches or swollen lymph nodes? i haven't had this symptom yet, or diahrea or nausea.

i would say the top 5 symptoms for me are

1. Cough. (its totally weird, only when standing up or moving around)
2. Fatigue.(walking very slow)
3. Dizzyness/Anxious. (it sucks)
4. lower back and under chest pain/diaphram area.
5. cannont sleep good, wake up only after a few hrs of sleep.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 6/18/2009 6:34 PM (GMT -6)   
No, it is not wierd to have no headaches or swollen lymph nodes. Everyone presents symptoms differently it seems.

It is also possible that you have one or more coinfections (Bartonella, Babesia, Ehrlichia/Anaplasma, Mycoplasma, EBV/CMV/HHV, etc.

I agree with the others - getting proper treatment from an experienced LLMD this early in the infection is likely your best option for recovery.

Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, IV Ceftazidime, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), probiotics, homeopathy.


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 6/18/2009 8:15 PM (GMT -6)   
I never got headaches or swollen lymph nodes in the beginning. I had a rash that I ignored in the summer of 2007. My only symptoms(and they were vague---didn't send me to the doctor or anything) were knee pain, some GI trouble and night sweats. Lasted about a week and no symptoms came out until 5 months later.

That was the start of my Lyme journey. Not one headache or swollen gland. LLMD said it is the strain you are infected with and your immune system which determines how it will react in your body.

Some get it worse than others. Although I think it all stinks. I think you will do great. It is still early. You just need to find the right doctor. I had to kiss a lot of frogs til I found my prince. He really has helped me so much. Don't worry...all your symptoms are totally Lyme. Doesn't the cough stink? As soon as I lie down it goes away too.

james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 6/18/2009 11:06 PM (GMT -6)   
^^ yeah the cough is annoying. its not even in my chest, its in my throat.. its a tickle and i feel like i need to clear it. totally annoying!!!! people think i'm dying when i cough 20 times an hr.

i never really heard about lyme in missouri because i think people here get infected with other tick born illness'. so its never reported to the cdc as lyme.

i wish i could sleep in also, waking up at 6:30 every morning is annoying also, i was depressed about what is going on with me, now i'm just mad about it..
you would figure if it is an infection your lymph nodes somewhere would be swollen, or a CBC test would be a little abnormal.

you say you had a rash? was it the EM rash? or another type of rash?

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 6/19/2009 6:13 AM (GMT -6)   
My CBC was normal and still is. No swollen lymph nodes. I think because the bacteria that causes Lyme is not like other bacteria. It is a little crafty bug. This is the whole problem with lyme, everything in the bloodwork usually looks normal. Ticks even put some numbing agent on your skin before it bites you...so you don't feel it. Kind of freaky.

I had an EM rash. I HATE going to the doctors so I googled rashes to see if I could figure it out. The Lyme rash that came up was huge!!! Mine wasn't so I thought it was just a weird poison ivy rash or something. After being diagnosed I since have found many pictures of EM rashes that looked like mine. Oh if I had only gone to the doctor then.

The ID doctor told me there is no Lyme in Maine. I don't live in Maine but I live in the NEast...we were going on vacation in Maine. Told my LLmD that he said "do the ticks know to stop at the border?" thought that was pretty funny. So I am sure it is where you live, too. It is everywhere.

My cough is in my throat and a tickle too!

james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 6/19/2009 9:08 AM (GMT -6)   
^^^has your cough gone away? what treatment are you on? it seems doxy in making my symptoms worse or is bringing out the other symptoms that i didn't have before.

your case sounds exactly like mine, the EM rash wasn't huge either on me, it was like a circle type bruise with a clear center, i thought it was a bug bite from sleeping or something.. i didn't see any type of rashes like mine on google. it never spread outward or anything. lasted about a week and faded.. i still went to the doctor and showed him, he asked me how long was the tick on me, i said i have no idea i was bitten, but said i found a tick on me a few days earlier but was never in me, it was just crawling on me, which i killed it. I just told him i want some doxy, he put me on 3 weeks, but its not helping, its making it worse...

i'm going in on monday to get a real blood test to see and going from there...

Post Edited (james from missouri) : 6/19/2009 9:17:32 AM (GMT-6)


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 6/19/2009 9:40 AM (GMT -6)   
You normally do feel worse on antibiotics. It is the bacteria dying and the overload of toxins in your body that causes an increase in symptoms(and new ones too) I felt awful on doxy last summer. What dose are you taking? I didn't have a high enough dose. Now I am on mepro/zithtromax. I have had this cough for over a month. Are you really tired? That was one of my worst symptoms on doxy. Did you have luck finding a doctor????

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 6/19/2009 9:44 AM (GMT -6)   
One more thing...I never saw the tick just the rash and the cough is a new symptom

james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 6/19/2009 10:09 AM (GMT -6)   
i did find a doctor, can't get in until monday though. but i just called this morning and i'm a new patient, i have doxy on hand so i feel decent about that. this doctor is pretty relentless on finding the cause of these symptoms.. He was recommended to me by another friend which had lyme disease last year. i'm on doxy 100mg twice a day.

i'm pretty tired all day, when i'm not at work (which work is a struggle) i'm at home laying down mostly. my cough has been here for around 3 weeks to a month.. its weird, somedays i cough alot, and somedays i might cough 10 times total.. my new symptom is muscle twitching around my hands, on the right hand by the thumb. i just hope it isn't parkitsons. if it was up to me, i would love to take doxy 4 times a day to knock this out.. i was outside for about 5 minutes earlier and had to come back in due to seeing a ton of floaters. sucks

when i got the cough, that was the major warning sign that triggered something serious. everything else is serious also, but the cough sounds like i'm going to die..

how long did it take you after you saw your rash to start on the antibitoics

pj1954
Regular Member


Date Joined Feb 2008
Total Posts : 57
   Posted 6/19/2009 10:59 AM (GMT -6)   
james dont jump the gun with the doxy it will make you tired it will also give you a copper taste in your mouth like you were sucking on a penny thats normal. the twitching is also part of lyme as are floaters.

go to the canada lyme home page see the list of lyme symptoms print out the page an go over it with a highlighter or circle all the symptoms that apply to you if you circle more than 20 find a llmd.

dont know if your current doctor told you to stay out of the sun while on doxy you will get a nasty sunburn if you dont or at least use a high spf sun screen.

If you have not had a herx from it yet taking a higher dose is not recomended unless your doctor prescribed it a herx can knock you on your butt big time so go slow.

dont mess around with this go to the doctor in springfield he's tops in the business and he can get you well hes been doing this for 20 years and knows his stuff.

you will have a wait to get in to see him the best doctors are NOT sitting around waiting for YOU to call trust me, they are busy if you have a supply of doxy continue taking it till you run out. at the very minimum you will need at least 6-8 weeks of doxy if you have a fresh infection- its best to find a lyme literate doctor and get their imput !

james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 6/19/2009 11:31 AM (GMT -6)   
PJ--i hear ya, my old friend didn't have lyme but a co-infection of it.. actually in the town i live at now, the doctor in springfield, has cousins that live here that are in the medical field.. i guess he doesn't accept insurance and it cost 650 for the first visit. which is understandable if i cannont tolerate it. i can to a certain degree.. my symptoms are pretty bad right now, my first thing is on monday getting the WB test done and going from there.. the doctor i'm going to helped my friend out that had a co-infection of lyme and he was in a wheelchair, and now is 90 percent healthy again..

i will keep on the doxy until it runs out, but i will probably ask for more than 3 weeks of treatment.. just to be on the safe side...

question? not sure if i've seen a clear answer from searching.. been doing doxy for almost 2weeks now, the symptoms seem to spread with treatment, is this normal... does this mean the bacteria is trying to escape or hide? Is it suppose to get worse with treatment before it gets better'

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 6/19/2009 1:20 PM (GMT -6)   
Gets worse before it gets better. And slow improvements.

The rash I had cleared up and I forgot about it. Then all my symptoms hit 5 months later when I got the flu. Went to some doctors that didn't have a clue. Basically went 15 months from the time I got bit until I got on the right meds. It's early for you. With the right dose of meds you should be able to kick this thing in the butt!!!

pj1954
Regular Member


Date Joined Feb 2008
Total Posts : 57
   Posted 6/19/2009 4:15 PM (GMT -6)   
doxy will bring out a bunch of stuff a lot of your symptoms may magnify themselves the facial twitching is a part of this mine did the same thing dont remember which anitibiotic brought that on.

would have to go back and look at my notes.

most llmds dont take insurance as info to you because a lot of the insurance companys do not or will not accept chronic lyme disease and have their heads up their rectums.

and its their way of not having to pay the claims its all part of the politics of lyme .

if you really want some great info on all this read the book cure unknown by pam weintraub shes really done a great job of explaining all this. she gives you tons of info on treatment what to expect and a lot of the meds used to treat this.
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