I have been going to the dr with no avail and these symptoms to me look like lymes disease but need to know how to step forward and get this properly diagnosed...

all these symptoms started in august of last year especiall the headaches and then a benign thyroid nodule appeared-all tests are normal but the headaches and fatigue along with a rash on the shoulders which went away with precription lotion has exasperated into all this I wrote above.
Thank you in advance

There's a very good lyme literate clinic in NC, that can diagnose you, and treat you.
Post in "Seeking a Doctor" forum, specifying your state. Many posters here utilize this clinic for treatment. I'm sure they'll e-mail the address, ph. no., etc.

That's the first step, the second is to check in here often and learn about this disease and various treatments. Good luck !

I also forgot to mention the most irritating side effects other than the warm sensation in my legs and lo grade fever I feel pretty terrible after I eat get a bad headache and most of the time feel "wired" like an electrical surge is going trough my body!
I also get bad headaches after intense exercise and feel like something is eating my body live at times very catabolic.
I hope it isn't kidney or liver or thyroid damamge from this if it is I hope it is reversable.

and as it states "Matthew is doing much better, and has moved on to other things" gave me a lot of hope to realize 'There is Life after Lyme'!

Hope it helps, it has a lot of good info!

Hang in there and Good luck!!!

-laserred-

flushing (more like a butterfly rash)

rashes on neck (mine is on the back of head, under the hair, that is spreading past hair line down my neck - had it straight for over a year now )

hot flashes (night and day sweats)

hands and feet burn in water (shower, bath, etc)

low grade fevers (and low body temps, too)

weakness

itchy skin

joint pain

severe headaches (back of head)

loss of appetite

frequent urination

These are just a few of my symptoms.

Do you know who the Raleigh doc is, or do you need this info?

Especially that RBC problem

I am in my 8th month of treatment and have had dramatic improvement. I started recovering after I went to an LLMD who gave me the proper amount of antibiotics. My PCP gave me an inadequate dose.

I've also been an a strict anti yeast diet. I learned about that here on LymeNet. You'll get tons of help here.

My advice is hurry up and make an appointment with an LLMD (Lyme literate Medical Doctor) who is recommended by others here. There is often a wait for appointments so call one right away so you can start the road to recovery.

Just to give you an idea of how much things have improved for me: In December I was barely functioning and could not hold my arms up. The slightest activity left me completely drained and I could not think clearly. I often felt like my blood was vibrating and I was constantly having electrical feelings and pinprick sensations that were torturing me.

Now: I just got back from 3 days of skiing. This afternoon I skied 8 runs and then drove for 3 hours. (in December I could not lift my skis, stay awake driving or remember where I was going).

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.

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quote:

---

Originally posted by neardeath:
Thank you all for your replies I am actually hoping that I have the disease as it is treatable.

I was diagnosed with thyroid cancer and that turned out to not be true awaiting removal of my thyroid but they cancelled the surgery because of an increased RBc count.

I am seeing a hematologist and they have done a ton of tests on me including the 24 hr urine..

my fear is that this is something other than lymes disease as I have been through the wringer and also tested + for epstein barr and diagnosed with mono but that wa over six months ago

I did some reading and there is some connection with possible tissue infections with lymes and the thyroid?

I have read a lot on lymes and a ton on every disease I can get my hands on and **** all the syptoms cross.

I will ask for a doctor and conmtinue to seek treatment.

Are there any OTC meds that you guys recommend for this?

I also forgot to mention the most irritating side effects other than the warm sensation in my legs and lo grade fever.

I feel pretty terrible after I eat get a bad headache and most of the time feel "wired" like an electrical surge is going trough my body!

I also get bad headaches after intense exercise and feel like something is eating my body live at times very catabolic.

I hope it isn't kidney or liver or thyroid damamge from this if it is I hope it is reversable.

thank you

---

Neardeath, Welcome to this 24/7 support group board!

for your info, please break up your paragraphs into shorter ones of 6-8 lines of text only and double space between paragraphs for us late-stage lymies with severe brain fog. Thanks so much!

You can EDIT any post/reply at any time except for the topic line...it can't be changed by us users.

You've gotten great info above. Here's my 4 cents worth....

Here's TREEPATROL's and tincup's combination newbie links. http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this.

print & read Dr. Barrascono's info first; you will come back to this often.

Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net/lymediseasetreatment.html

The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 2 USA's Lyme testing labs:

IGENEX LAB:
797 San Antonio Road
Palo Alto, CA 94303
1.800.832.3200.

(If the early test, called IGM, is negative; the later test IGG is NOT done!)

Please see their web site: www.igenex.com for their current prices and

to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your FROZEN blood taken EARLY in the week so it doesn't sit in post offices!

Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!

NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers.
Medicare patients do NOT have to prepay!

OTHER LAB: MDL from NJ, www.mdl.net
see their site; they too require their own form. NO prices are listed; you must call their 800 no.

Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.

NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).

FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!