Anyway, I have been dealing with weird symptoms since the fall. It started with eczema on my ears,siarrhea, appetite not as big, heart palpitations, anxiety, hair loss. So we tested my thyroid, that was fine, but he thought maybe my dosage might be too high so we lowered it. No change...

Had heart tests..EKG, ultrasound and holter monitor. The u/s showed a triscuspid valve prolapse, which wasn't there in May 2002 when they did a u/s to check for the Mitral Valve Prolapse (to see if I needed abx during childbirth since I had a bad response to the one they gave me). MVP was gone.

Through the winter I felt lousy, but we had so many viruses and colds. I still had bouts of diarrhea, which I was told was probably IBS or from having my gallbladder out years ago.

In March I was having flank pain near my kidney, went to dr, the NP said it felt like a "knot" in my back. So I just went to chiropractor through April. She said she didn't feel anything "off", but an adjustment often made me feel better for a few days. I was at work on 4/22 and felt like I was going to pass out so I had orange juice, helped a bit, but felt achey all over. This continued and just thought it was the virus my boss had (she was sick for almost 10 weeks). The aches were always there...in my muscles, hips, knees, elbows, neck and back...though some days were alot worse then others. I am out on a medical leave right now.

I was having stomach pain where I couldn't eat, burning on each side of my stomach and towards my sides, which now my PCP thinks could be my kidneys since I am still having back pain. I also had diarrhea 4-5x's a day up until 2 weeks ago...now just 1-2x's a day, some days not at all. I have lost 35lbs since the end of May. Most days I can't eat more then a few bites, but I force the water in.

I was also having abdominal pressure and felt like a UTI. I had numerous urinalysis, all showed trace blood at first and now they are showing +2 for blood. I have a UTI right now, or so they think. I couldn't pee Saturday so I went to the doctor and he put me on Amox, Sunday I peed all day, Monday normalish, Tuesday felt like I had to go, but could only force a little out. Wednesday my urologist's associate catheterized me and I have that bag strapped to my leg until Monday. She said due to the pins/needles in my hands and legs at night and blurry vision she wants me to see a neurologist for a neurogenic bladder and other testing.

My other symptoms are sinus issues worse then usual, vertigo, anxiety, palpitations, some depression, waking up alot at night, tired, weak, breast pain, zaps in my shoulder muscles, sensitivity to noise, touch, irritable, etc...

I have seen a cardiologist, urologist, Infectitious Disease Doctor, ID doctor did 14 vials of blood, and said all was fine. He said that the western blot showed 2 bands, though band 41 was a false positive 50% of the time and I can't remember the other band#...my results are in the car and I don't have the energy to go get them right now to check. ID doctor said it's just a virus and to go home. He also said to take antidepressants to see if they would help. See ya! Oh originally he said if it was equivocal he would treat me...then when I went in for the results he said he wouldn't.

My PCP says the tests are negative so it's not LD. Though with me on Amox he said if I showed improvement in the next month he would continue me on the Amox another month. Though it's a 250ml suspension with 2tsps 3x's a day. (on liquid due to sensitivities to the fillers they use for the pills). I doubt this is high enough to really have me Herx. Though when I started the Ceftin for the UTI in early June, within 5-6 hours I started the tingles in my arm...the next day they were so bad and the anxiety was AWFUL...it was like I had something crawling under my skin the 3 days I was on it. Eventually it got better, but never went away. They said it was a reaction to the antibiotic so they stopped me. Now I am thinking it was a Herx.

So...now I am waiting to see a neurologist. Would it be beneficial to have a spinal tap? Any certain tests he should do?

I am in MA so I know there is Dr. D in Boston one day a week and another doctor that deals with co-infections, though she doesn't take my insurance. Dr. D is covered.

Can anyone tell me if I ended up going to the Dr not on my insurance...would my insurance pay for tests and meds she prescribed? Or would she have to be covered under my insurance for them to pay?

I am just at the point where I can't do this anymore. My Mom took a month off from work to help me with the kids. I just can't care for them. Now she is back to work 3 days so I am alone. Today I asked my Dad to help me so he has been here...though it's not the same as having my Mom here.

My kids are really feeling this bad...they are crying more, clingy and this is SOOO not like them.

How long does it take to get in to see Dr.D? How about the female LLMD, if you have been to her you know who I am talking about? I need to make calls today. I can't do this when they have done every blood test, CT scans, u/s, scopes, etc...shows nothing wrong. My PCP said that we might not find answers...he is trying to refer me to anyone he can think of to get answers so he's a good guy. Though most doctors are just ignorant to LD.

OHHH...and I meant to say this first, but I had a BULLSEYE rash in October...4" x 2 1/2" in my groin. It was hot to touch and a little raised. The NP said it looked like a fungal infection and prescribed cream. It burned like crazy and after a few days I stopped using it...it didn't help anyway. After 3 weeks the rash faded. I remember saying to my husband and Mom that the rash looked "weird" to me. I never thought LD. I wasn't out in wooded areas, don't have pets to bring ticks in. But I did take a walk a few nights a week on a sidwalk (though near trees and grass) and my parents have deer in their yard so I couldn't gotten something when visiting there, since they have dogs that could've brought a tick in or being out on their lawn. I never saw a tick, but remember seeing the rash and since I am overweight thought it was because of "rubbing" so I used a fungal powder, but that didn't work. So I know this has to be Lyme.

Any thoughts, insight, recommendations would be so appreciated. Please if you can tell me if it will take long to see a LLMD? Would I Herx on a smaller dosage of Amox? Do you think if I went to a non-covered dr would my insurance cover the meds/tests? How much would the tests cost to send to Igenex? How long do I need to be off Abx to have the test be more accurate?

Thank you so much if you made it this far! I hope I left enough "white" between paragraphs. I know it can be hard to read...and with my lack on concentration and brain fog I know it's easier to read it this way.

I hope I can see a LLMD soon, too!

My other symptoms are sinus issues worse then usual, vertigo, anxiety, palpitations, some depression, waking up alot at night, tired, weak, breast pain, zaps in my shoulder muscles, sensitivity to noise, touch, irritable, etc...

I have seen a cardiologist, urologist, Infectitious Disease Doctor, ID doctor did 14 vials of blood, and said all was fine. He said that the western blot showed 2 bands, though band 41 was a false positive 50% of the time and I can't remember the other band#...my results are in the car and I don't have the energy to go get them right now to check. ID doctor said it's just a virus and to go home.

He also said to take antidepressants to see if they would help. See ya! Oh originally he said if it was equivocal he would treat me...then when I went in for the results he said he wouldn't.

My PCP says the tests are negative so it's not LD. Though with me on Amox he said if I showed improvement in the next month he would continue me on the Amox another month. Though it's a 250ml suspension with 2tsps 3x's a day. (on liquid due to sensitivities to the fillers they use for the pills). I doubt this is high enough to really have me Herx.

Though when I started the Ceftin for the UTI in early June, within 5-6 hours I started the tingles in my arm...the next day they were so bad and the anxiety was AWFUL...it was like I had something crawling under my skin the 3 days I was on it.

Eventually it got better, but never went away. They said it was a reaction to the antibiotic so they stopped me. Now I am thinking it was a Herx.

So...now I am waiting to see a neurologist. Would it be beneficial to have a spinal tap? Any certain tests he should do?

I am in MA so I know there is Dr. D in Boston one day a week and another doctor that deals with co-infections, though she doesn't take my insurance. Dr. D is covered.

Can anyone tell me if I ended up going to the Dr not on my insurance...would my insurance pay for tests and meds she prescribed? Or would she have to be covered under my insurance for them to pay?

How long does it take to get in to see Dr.D?

How about the female LLMD, if you have been to her you know who I am talking about?

I need to make calls today. I can't do this when they have done every blood test, CT scans, u/s, scopes, etc...shows nothing wrong. My PCP said that we might not find answers...he is trying to refer me to anyone he can think of to get answers so he's a good guy. Though most doctors are just ignorant to LD.

Any thoughts, insight, recommendations would be so appreciated. Please if you can tell me if it will take long to see a LLMD?

Would I Herx on a smaller dosage of Amox?

Do you think if I went to a non-covered dr would my insurance cover the meds/tests?

How much would the tests cost to send to Igenex? How long do I need to be off Abx to have the test be more accurate?

Thank you so much if you made it this far! I hope I left enough "white" between paragraphs. I know it can be hard to read...and with my lack on concentration and brain fog I know it's easier to read it this way.

Terri/QUOTE]

Terri, welcome to our lyme world. I am NOT a dr. but all of your symptoms esp. the bulls-eye say LYME disease!

Which lab tested your western blot? Only Igenex, MD labs, & Bowen are the most reputable LYME labs.

IGX's western blot igm & igg costs are $190 now; rate increase 5-05. IT'S PREPAY; credit card. They don't handle insurance. You should check with YOUR insurance company to see if they DO have that lab on approved list. I was reimbursed $43 of my $180 pd last year.

If you go to NON-COVERED dr; NO, I'm 99% sure your labs/etc. would NOT be covered. CHECK WITH YOUR INSURANCE COMPANY before doing anything.

LLMD - in Iowa, it took me 6 wks. to see a beginner LLMD since he takes ONE lyme patient per week; 20 lymies max.

Hopefully, others will come along & give you more info.

THANKS for having shorter paragraphs. I made a few shorter yet so we get the most important points.

I suggest you type in wordprocessing a NEW POST, and then copy/paste it over here so you don't lose ALL your hard work ok.

I can't get into my wordprocessing to copy/paste TREEPATROL'S NEWBIE LINKS, etc. for you. Look for his post & print out Dr. B's guidelines...32 pages. Best wishes.

Welcome. Sorry you are here to join the party.

The bulls eye rash and creepy crawlies under the skin when on abx (antibiotic) would send me to an llmd.

I'm in Pa so can't help on lead times. Ask for a cancellation. That might speed it up a bit.

Our llmd thinks along the lines of DrD. We are getting better. Our guy is open to other proticals too. He's not taking patients at the momment.

Just take it one day at a time and do only what what must be done for you and your kids. All those shoulds can be ignored. Get as much help as possible.

First of all, the bullseye rash is diagnostic of Lyme disease! and I would stay away from any dr who says otherwise.

Did you happen to take a picture of it? If not, and it shows up again, get a photo! Put a ruler or coin next to it to show the size.

Your dr most likely did not use a lab that specializes in Lyme testing. I would suggest Igenex lab, MDL, or Bowen.

That other band you mentioned could be key. When you get the chance, let us know which band that was.

And yes, having been on abx may have altered the test results.

You need to find a good LLMD....one who believes in testing and treating co-infections of Lyme such as babesia, ehrlichia, or bartonella.

Please check your email.
Treepatrol's links http://flash.lymenet.org/ubb/Forum5/HTML/000569.html

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

The cause and spread of Lyme http://flash.lymenet.org/ubb/Forum1/HTML/032259.html

More info: http://www.ILADS.org/

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html

Lyme Disease State Info http://www.lymeinfo.net/support.html

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

http://www.anapsid.org/lyme/matthewgoss/index.html

I think Dr. D sometimes will squeeze in patients but you have to phone, e-mail and fax, sometimes repeatedly...

You need 2,000 mg of amox. per day to start...If you got weird new symptoms on antibiotics, Dr. D would say this was a good sign you were on the right track with diagnosis and treatment (but many mainstream doctors will call it a drug reaction). So Ceftin might be a good drug for you (I'm not a doctor though!).

Most of us seem to have done doxycycline first, because it also covers erlichiosis.

Igenex or MDL labs were covere totally for my family as long as a doctor in the BC/BS network ordered them. You have to order the kits, make an appt. at a lab, and arrange for shipping. Yourr PCP or Dr. D. could order these.

Then again, if you have a positive band that is specific for Lyme, you may not need any more testing. Dr. D can tell you this, but so can folks on Lymenet, sites online about the Western Blot, or books on Lyme. Most doctors look for a certain number of bands, but Dr D and other Lyme specialists look for specific ones.

Don't remember your other questions, but hope this helps. When you are feelins so sick it is hard to get stuff done. I think the priority is to contact Dr D aggressively, get a referral to him and see him asap.

Your urolgical problems sound JUST like mine. They haven't found anything wrong yet, he did mention neurogenic bladder.

In the meantime i went to a neuro, had an MRI with and w/out contrast, and he says there are NO signs of MS.

The urologist asked ME if i think it could be the Lyme. I am on meds now for a relapse(I have tested + many times for lyme)So the urologist told me to see if the meds calm these symptoms down.

My LLMD said urinary problems are common, esp. Int.Cystitis. But I don't have that. I have read that neurogenic bladder is also a SX of lyme. There is an abstract on this site.

As far as the tingling goes, i start tingling the minute i go on ceftin.

I have had flank pain that has come under the I don't know what it is category. I had my gall bladder out for that pain and abdominal pain. I had a test that showed my gall bladder was only working at 1%, so i had it out. But all the pain is still there.

My LLMD is awesome, but everything needs to be checked out before you can say its the lyme acting up agin.So after my GB was out, he confirmed the pain is from the lyme.

Please have a western blot done by IGNEX. Lyme is a clinical DX, so you really need to see an LLMD right away. As soon as they hear you had a bullseye rash, they are going to treat you.

As far as the insurance goes, you need to speak with them directly. MY LLMD is out of network, but a lot of my tests are covered 100% that he has ordered.

My question is to "Jellyfish"...when you say you start tingling as soon as you take the Ceftin, is this a herx for you? Or a side affect of the medication?

I am seeing my PCP on Monday..my Mom, sister and husband are all coming to the appointment. We are goign to push for the referral to the LLMD that isn't covered. I called my insurance and they said if my Dr and the person that reviews the referrals will sign the referral they will cover it 100%.

I have had millions of blood tests, CT scan with and without contrast, Upper GI, Gastroscopy, every urology test, etc...and nothing is showing up. My PCP says sometimes nothing comes up and "that's it, we don't have answers". If he won't give me the referral my sister and parents said they would help find some money to help. I am grateful for that. But I don't know how much it's going to cost for tests and antibiotics. It's not fair for them to use their savings, but I need answers and I need to feel better.

Do you think the Ceftin tingles/anxiety/palpitations I got within hours of starting it, was Herx or a reaction? I am thinking it is a Herx. I thought it took at least 4 days for a Herx to start, but I read somewhere they can start immediately on the medication. I can't remember the dosage, but if I got Herx from a regular dosage, does that mean that would be a high enough dosage for me?

Sorry for all the questions, but I want to be "armed" for my appointment Monday afternoon. I don't want to leave any stone unturned. I mean...if I am having kidney pain and the CT scan shows normal and urine shows kidney function okay...should I do more tests to check my kidneys? I feel deep in my gut that it is Lyme...but then I doubt things and say "what if it's something else and we miss that?" I know I am probably talking out of fear, but I don't want to "MISS" something in case...

How long do I have to be off Abx to do another Western Blot? DO I pay ahead of time for the kit? Or do I sent payment when I send my blood? I want to order the kit ASAP if possible. Is Igenex the best...or Bowen and MDL just as good? I will call on Monday to see if they cover any of these labs. I know Igenex is prepay, but are the other 2 as well? That way I might have a better chance of my insurance paying for it.

I was thinking if I got off Amox, waited (2 weeks???) and then had my PCP's lab take the blood and send it to Bowen or MDL...though not sure if I should have my PCP do this because if it comes back negative, then I might never get a referral to a LLMD.

My head is spinning with questions...so sorry for my babbling if I am not making sense. Thank you so much everyone!

Terri

I would worry less about the testing (I mean, by all means do it) and make treatment the priority. In other words, don't get off antibiotics and give the bacteria the upper hand for those weeks.

Every time I went on a new antibiotic, I got new symptoms. I was in the exact situation you are in, really. Ceftin made me slur my speech and my arms were on fire. I don't really pay attention to timetables in books about "herxes" and so on. Dr. D, actually says the bugs get stirred up and doesn't necessarily talk about die off.

In other words, taking the meds get the bacteria moving when they were hiding or dormant, and you get more symptoms. Some of them are really weird.

This could also explain my Western Blot converting to extremely positive on the meds- the bacteria moved out of hiding and antibodies were produced again.

There is often a way to get things covered if you have insurance, you are right...Doctors can write letters of urgent medical necessity, etc. and explain this care isn't available in state, or in network or whatever. Sometimes is takes a little work w/claims and calls etc, but we have gotten everything back so far.

Dr. D isn't a bad place to start if he is close. I would love to know who the female MD is...plese let me know how she is if you do go!

Oh- and a lot of us "ramp up" with antibiotics. In other words, we start slow, maybe "herx" at that level, then keep moving it up. I have never taken more than two weeks to get up to the maximum dose for me, though. Maybe others can speak to this...

Bull's eye rash is diagnostic for Lyme. You need a photo to prove it though.

Blood in urine-for me is was from the co-infection Babesia microti. This needs a different treatment than Lyme. Doxy stopped my Babesial fevers and chills tho.

The key is the the other band on your Western Blot, you may not need more Lyme testing but should be tested for the co-infections.

Spinal tap? What is to be learned?

PCP-Monday- with a bull's eye rash and your symptoms he/she should write you a script for doxy. ILADS guidelines are for 300-600mg/day. See www.ilads.org treatment guidelines. Print and point out the revelant section to your PCP.

Ceftin is pretty potent and yes, the tingles/palps and anxiety were probably a herx. Some prefer to start easy (doxy) and work up to stronger abx (ceftin, ketek,etc)

If it were me I'd skip the neurologist and the spinal tap.

My HMO won't pay for out of network doctors but covers most meds (not IM or IV) and tests I run thru them.

I don't see a need for you to stop abx (antibiotics) until you see an LLMD.
There are several about one hr north of NYC. There is one (that I know of ) in NYC.

I sent you an email.

Has anyone ever had hematauria (blood in urine) related to this? I just got diagnosed with that and assume it is unrelated, but thought I would ask. I have to go for an ultrasound and cystoscopy for it.

I wouldn't be too sure about it being unrelated. I am dealing with blood in my urine for 3 months or so now. I have had all the urology testing and it all comes back normal. I had the scope and the dr said that it all looked fine, but he would treat me for interstitial cystitis just in case. Which is a symptom of LD and so it neurogenic bladder, which they are trying to say I might have. I don't believe any of it. I am tired of each specialist saying they don't know what it is, but they are giving me 2-3 prescriptions. I am NOT taking them of course, but I am getting pretty ticked off with the medical profession.

Does anyone have any websites that talk about blood in the urine? I need to print it out for my PCP because him and any of my "specialists" don't know why I am getting blood in my urine.

I am in Northeast MA...20 miles north of Boston. I wish we were closer. You said you want to see Donta...being in CT I have heard there are fabulous LLMDs there.

I haven't asked my Doc aboutit. It really doesn't bother me, because i get new SX every time i start a new med, and not nesessarily in cycles.

Dr. H. said some people get worse immediately, and then see results the following month.

I wish i could help you more.

For my IGNEX test, i had to send the money in with the urine samples. They say you get a discount if yu pay up front. Some discount 380 bucks! But that was for the Lyme blot and antigen test...PCR stuff, so i would assume thats more than the Western Blot.