I met with my pain doctor today who received the results.

Now they weren't off the chart but they consulted with a lyme literate doctor and he said the results were suspicious.

so now they are going to start treating me for it.

If it was that deer tick that bit me when I was in the US Army, I've had this since I was 19. I am now 35!! but how to prove it?

The NP that suggested this has truely saved my life!!!

i'l glad you got a dx and can now get treatment quahog.

has your dr told you what the treatment will be yet?

I have been told that they want to start me on Doxycycline for a few weeks to see if that will help but it is my understanding that I may need IV therapy if that doesn't work. I may have had this since I was 19, I am 35 now.

Needless to say I am a bit frightened of the prospect of all this. but after all these years it feels good to finally have the cause.

I think it's pretty awesome that you have finally found the cause of your medical problems. At least now you can focus on what is ailing you and on getting better. So congratulations on that!

It's crazy how long it takes sometimes to get a diagnosis. I've been trying for over four years now, and am still out of luck. Maybe I need to go see those docs of yours...

I hope the treatment works and you start feeling better real soon.

Wow Quahog,

That's amazing that it has taken this many years in between a tick bite. When I was young, I had six ticks on me. Different times of course. Where we lived, there were alot of them and I was always playing in the woods and had animals that had them. My Mom got quite good at getting them off me. Today, it would freak me out to get one!

I wish a speedy recovery for you and wishing you pain free days!

Take care,
Linda

Hey, Quahog. I know that you are happy to just get a dx. That takes a lot of weight off of your shoulders. I can't imagine that it took 16 years for them to find out. Like I always say, docs don't always know as much as we would like to think. It is a shame that they let it go this long, allowing long-term disabilities. I found this site for a small explanation of it...generally treated fairly quickly after being infected....
http://www.cdc.gov/ncidod/dvbid/lyme/

thank you for the support.

I have been going nuts since i found out about this. My internist doesn't think it is lyme even with all my symptoms and i have a lot especially the AV heart block. The internist in fact has done nothing to help.

The reason i think he is doing this is because my test results weren't overly convincing. It shows a bunch of weak positives that the lab is ruling as indeterminate. My pain doc was one one that ordered the test and when the results came back he consulted with a Lyme Literate doctor who said it was suspicious for Lyme so here I stand.

I am not getting any treatment. I have an appointment on December 5 with a doctor who is supposed to be a Lyme literate doctor but the problem is he doesn't take insurance. Cash or credit ONLY !! I can understand why but it makes it hard on me especially when the only income I have is from Social Security. the doc wants 450.00 for the 1st visit !!! I guess I have no choice but to do this if I ever want to get treated. Why oh why doe sit have to be this difficult. You know if I had let's say cancer it wouldn't be this difficult to get treatment. Something sure isn't right here

Quahog, I just replied to your post on the Lyme forum. I don't want to get into a controversy on this site but I do want to caution anyone reading this about the CDC current statement. They seem to switch sides on the issue of CHRONIC (long term) Lyme disease. You most probably fall into this category if you were indeed infected 19 yrs. ago.

You might want to do alot of research prior to you appointment with the LLMD. Suggest you check out some other Lyme sites.

Also, would be a good idea to get a notebook & write down all your symptoms,both current & over the past years. If you have cognitive issues you might even want to ask someone you trust to go with you for this appointment.

Lyme has many different symptoms & usually won't be diagnosed until everything else has been eliminated as a possibility. I'm not at all surprised the internist doesn't agree you have Lyme.

Research IV antibiotic therapy,how will you pay for this? The $$$$ people are spending on LLMD's & antibiotic therapy is mind boggling!! You might want to research alternative therapy such as salt/vitamin c,herbals & vits.

Feel free to pick my brain, I've done alot of research over the past several years. I discovered Lyme disease through a movement disorder forum. I have myoclonus (severe body jerks). I have seen vast improvement in my strange symptoms & I've never taken any antibiotics. PM me anytime....

Wishing you LUCK,Buttons

I have been a support group leader for 8 years in Santa CRuz County, California. Orals work for many people, so does IM Bicillin, Intra-muscular Bicillin which is just one shot a week in the buttocks and is cheaper than IV.

Salt/C, herbs, etc have never been proven to help with Lyme and you can hurt yourself. In 8 years as a support group leader I have never once seen a successful full remission of chronic Lyme without longterm antibiotic thrapy. I would recommend a good Lyme doctor.

There is a current double standard of care- IDSA & ILADS. The first recommends limited treatment and calls continued symptoms Post Lyme Syndrome. The second treats until all symptoms are gone. Here is a good article about The Two Standards of Care at ILADS.org, the web site for Lyme doctors. http://www.ilads.org/insurance.html

I was bedridden with very bad neuro Lyme and am normal now thanks to 9 months of IV Rocepihn years back. It was very $ because it was on patent back then. Now you can get it as cheaply as $412 a month for IV.
But IM is safer and orals too. MANY longterm people do great with IM or orals. Unless you are bad neuro Lyme it is not worth the risk for IV.

I used to have chronic pain and firbomyalgia and I hvaen't had that for 7+ years now which is nice. I hope you get there.

I am trying to get some more people to the Lyme forum here because it is not very active. This has a great set up and it would be nice to have more people there.

If you have Lyme it is VERY common to have the coinfctions Babesiosis, Ehrlichiosis or Bartonella. If those are not treated you will stay symptomatic.
They are treated with diffferent meds than Lyme. I had HME Ehrlichiosis, Babs, Bart & Lyme. Ehrlichiosis is treated with Doxy, Babs with anti-malarials, Bart with quinolines and Lyme with lots of things*)!

So get tested & evaluated- check your records and see if your doctor tested you for them- if not, that is a good indicator right there as to your doctors knowledge of TBDs- and be aware that all can be blood negative. Ehrlichiosis was shown to be blood negative in 2 of 4 fatal, acute cases as seen in this pubmed abstract http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

QUOTE:Evidence of E. chaffeensis via IHC, ISH, and PCR was documented in all 4 cases. Abundant immunostaining and in situ nucleic acid hybridization were observed in spleen and lymph node from all 4 patients.

Significantly, in 2 of these patients, serologic evidence of infection was
absent.
UNQUOTE

Congratulations on your diagnosis*)!*)!! It is GREAT news*)!
It means you can get better or even full remission*)!
It is nice not to be in pain*)!
I was so impaired I never believed I would be like normal again.
Yet it happens all the time!
Sincerely,
Sarah

Dear Quahog, I am in complete agreement with SarahO. I went from doctor to doctor after taking an engorged tick that was attached to the back of my head to a reputable Lab in August of 1989 it was dismissed with,"We don't have Lyme disease in Texas." From the day I took the tick in, my whole life changed!! A once very active jogger, tennis player, wife, mother of three, working as a part time OB registered nurse, I became an invalid with extreme fatigue, dizzy spells, eye floaters that developed over a two month period and were so extreme that the eye doctor I saw was certain I must have an injured my eye. I kept going back to the doctors for tests for anemia, lupus, rheumatoid arthritis, never thinking to bring up the tick incident because I had already been told that it did not exist in Texas. The tests were negative. My pain level was unbelievable with headaches that were diagnosed as Migraine. This did not make sense to me because it was not just one sided and sometimes I just got the bright storm (aura) in my line of vision without the terrible pain. Pain jumping from joint to joint. Swelling of my knees. My family was very concerned because I had stopped all activities and had to quit my job as a nurse, without a diagnosis. Just before one of the two shoulder surgeries I had, a doctor was concerned that I had an abundance of neutrophils (white blood cell). I asked what he thought and he said that he would clear me for surgery, but he felt I should address this with a hematologist. We were constantly moving with the military and a referral to a hematologist wasn't needed according to my patient care manager. As time went on I decided with all the symptoms and no diagnosis that I must need to see a psychiatrist because my family felt I had some underlying condition. This was now 1992. I remember sitting in the office wondering if I was a head case. The doctor spent 15 minutes going over my medical records with me and talking as he read. He said that if he had had all the tests and surgeries I had had since 1989 that he would be depressed. ( By then I had tumors removed from both feet. Arthroscopic shoulder, knee aspirations for fluid, multiple bladder and one kidney infection that took months to clear. Sinus infection one after the other, shingles, thumb joint that should be replaced and a spinal series that had a rather fast degeneration of plain old arthritis.) To get back to the point, talking with me, he felt I was not depressed, but definitely had a syndrome or undiagnosed disease. I asked if he could run a test since I wanted to go back to my family with something. He said he could do an MMPI. The results were given to me a month later. I was a very well adjusted person that related to men and women as people rather than differently because of their sex and that was good in my field of nursing. After this episode I decided that I would try to exercise at the gym. Since the tumor removal on the right foot I had a great deal of pain on the ball of my foot and like everything else---WHY? I started Nordic Tracking and got up to 45 minutes Mon. through Fri. and did light weights on opposite days. I would go home, shower, and then sleep for two hours, but I was exercising! The pains that I had been suffering through the years were helped slightly with pain medication. I learned to live with the right eye of little use. The auras came and went. It seems so did my life. My families nickname for me was Einstein, because I was forgetful and seem to ask many questions over and over. In 1995 we moved from the Army War College to Ft. Carson in Colorado Springs. It was difficult getting used to the altitude. I continued with the extreme fatigue, dizzy spells, brain fog, joint pain, forgetfulness, and starting getting grumpy. My husband left his job as a Dentac Commander in Pa. for his new post as a residency director for a great group of young dentists. I was so envious of them all. There were white water raft trips, hiking Pike's Peak, skiing, and I was lucky to still get to the gym and do the little exercise I could. In August of 1999 I had a brain rupture and I must say this probably saved my life. I was air lifted to Denver University. In recovery the doctor asked me questions and I could barely stutter the answers. I knew I was in for a long haul. He told me the next two weeks in ICU would be two of the worst of my life because they would awaken me every hour on the hour. They were two of the best weeks I had in 10 years. Within three days my right eye was back. I felt great by the end of the first week. The foggy brain was gone, pain had abated, no auras, still dizzy but that is to be expected with the surgery that I had. I thought it must have been a faulty brain artery causing my problems since Aug. of 1989. While I was in rehab. to learn to walk straight and talk again without a stutter, my daughter, a second year dental student, was at a conference and the patient that was being discussed was a man that had gone through the same surgeries, infections, symptoms--to include a brain rupture and his diagnosis was LYME DISEASE. My daughter called home and told her father to get me to Penrose Hospital and send my blood to IGENEX Lab. We did and the test came back positive for Lyme (Borrelia Burgdorferi.) The reason I had felt so good in the ICU was that they were infusing Rocephin in one of my IV's. That happens to be one of the medication used in stubborn Lyme disease. We took the results to my doctor at Ft. Carson and he discussed this with several other doctors and they decided to give me two more weeks of Rocephin IV because I had probably had the disease since 1989 when I had taken in an engorged tick that I got ridding horses the day before in the Hill Country of San Antonio. I was back to me again and I was so happy. Because of the brain surgery, I could not leave Colorado Springs until the swelling of the ventricles was gone. If you should change altitudes it could cause a possible stroke and Colorado Springs is more than a mile high. My husband was assigned to Ft. Sam Houston to become the director of the graduate dental residency programs. I joined him in January of 2000. About a month after we got back to Ft. Sam the symptoms started again. I got an asap referral to infectious disease. That was a real eye opener! I told the doctor I had Lyme disease and he asked what meds. I had been on and I told him the whole story and the 10 years of Hell I had been through. He said with the amount of Rocephin that I had I most likely did not have Lyme disease any longer. I also told him that I was having sweats on a cyclical basis and was worried maybe I had malaria. He just about laughed me out of the office. He said I had "Post Lyme Syndrome." I would have to live with it. Malaria was not possible because my husband and I had not been stationed anywhere that would have put us in danger of this disease. No medication was given and I ended up barely able to make it down the hallway to the bathroom. Thank the Lord Above that tour was only two years. We came back to Ft. Carson for my husband's final tour with the Army and by now I was using a wheelchair part of the time and my oxygen saturations were so low that I started on oxygen. I was found to have sleep Apnea. Luckily, my doctor treated me with oral antibiotics. They did help some, but not like the Rocephin I had had back in 1999. In 2004 Dr. David Martz opened The Rocky Mtn. Chronic Disease Clinic. Dr. Martz himself had been misdiagnosed with ALS and went down to Texas (where they don't have Lyme disease.) He was treated by a Lyme Literate doctor who put him on six months of IV Rocephin. After a 75% recovery, Dr. Martz came back and started treating people like me. My spine was degenerating and I had a neck fusion, followed by another tumor removal of the right foot and in May of 2005 I was referred to Dr. Martz's clinic and had a whole new series of blood tests sent to IGENEX Lab and I was found to have two types of Borrelia (Lyme Spirochete) and a co-infection Babesia WA1 and Babesia microti. The Babesia explained the malaria type symptoms and the possible brain aneurysm rupture. I took the results to the Army doctor and Ft. Carson placed the chest catheter and Tricare delivered the IV's weekly for 8 months. Then I got a letter stating that the IV treatment was not FDA approved and if I wanted to continue it would be at our cost. The amount of Rocephin was 4 grams daily. My cost was $2000.00 a week. I cried and cried, but my husband and I knew that I was doing well and the doctor had tried taking me off the IV meds at about 5 months and all the symptoms came back within two weeks. I was taking oral mephron for the babesia along with IV azithromycin and IV Flagyl. The borrelia spirochete has l33 genes and it can drop it's cell wall and move into the patients individual cell where it becomes a cyst form and when this happens it takes a long time to treat. Remember I went 10 years with this disease moving throughout my body and brain. I am sorry to say our clinic closed in July of 2007. Dr. Martz was treating patients from all over the world and he was getting tired. Even the doctor that had treated him in Texas came up here to live and work. Dr. William Harvey is really more into research. I saw him most of the time because my case was complicated with co-infections. In February, I will see a doctor out in San Francisco and hope he will help me to find an end to this disease. I am taking pain meds, glyconutrients, vitamins, oral actigal to save my liver, IV rocephin 500mg.daily, IV azithromycin 250mg every other day, IV Flagyl 250mg daily. So it is important that you see a Lyme Literate doctor because of the complications this disease can present. Oct. 3rd. The Infectious Disease Association wrote an article that stated that Lyme Disease could be cured with two to four weeks of doxicycline and that might be the case if a patient is treated right away, but there are many patients like myself that did not get treated because we were told there was no Lyme in the area that we were in. They are now finding a strong link from Borrelia to other syndromes like alzheimer's, ms, als, gulf war syndrome, chronic fatigue, lupus to name just a few. This disease destroys the immune system if left untreated. This past June I had a Herpes panel and the tumor necrosis was off the charts, as was epstein bar and cytomegalovirus and several other herpes which explains my bouts with shingles. So please get to a Lyme Literate Patient Care Manager. I can be reached at 719-440-9915. My Best to You, Pam