posted
I felt as though no one really believed me so I stopped recording at some point.
I remember getting frustrated when I had to wait 2 months to see a well respected rhuematolgist only to hear him say, "Alright I don't have any more time to listen to you.
You smoked for over 30 yrs, maybe you have lung cancer. Let's do a chest x ray. I'm not going to do any other testing..those tests are expensive you know".
Thank God it wasn't lung cancer. He had an answer for all of my symptoms......old age. He said he gets the same creaking in his neck.
I had a tick on my sweater that was draped over my shoulder in July 2004 while sitting at my desk at work. A co-worker pulled the sweater off, showed me the tick and shook the sweater.
I became seriously ill with a so called virus after a few days and haven't been right since..........
Before that day I was a healthy 48 yr old who never had any health problems. I could run circles around my kids. My body felt the same as it did when I was a teenager.
Symptoms started a few days after the tick incident. Right arm and neck swollen with a red rash that covered most of my arm.
I felt horrible from that moment on....I thought I was having a stroke or a heart attack.
Went to the ER and was dx with Peripheral neuropathy. Blood tests appeared to be normal except the basophile count was high.
Followed up with PCP... Labcorp tested neg for Lyme 3X since then. Tried to get the numbers related to the blood test from Labcorp (report says neg only-no bands) They tell me I have to get them from the doctor.
As sick as I was back then, I distinctly remember the neuro saying something like...not enough bands. I didn't pay much attention to it at that time. Now I would like to know what BANDS did show up on the test. Labcorp only reports negative and shows no numbers at all on the report.
Severe heartburn and constipation fatigue, lethargic, and dizzy to the point of passing out. My face felt as if it were burning. The right side of my nose has red splotches that appeared since then.
My right eye would twitch uncontrollably and my face would tingle and feel numb. To this day I still have the same feelings from my ear that extend along the cheek area. My right eye twitched uncontrollably at times.
I couldn't hold my neck up. It felt as though my head would snap off. My ribs and the sternum bone hurt SO BAD!!! My bones were killing me.
I was afraid to go to sleep at night because the symptoms were much worse at nighttime. The nightmares started along with the physical symptoms.
Before this happened I never remembered my dreams or if I had one. I could not lie on my right side because of the arm.
When I went to the ER in July 2004, I showed the doctor this bump like growth on the inside of my elbow. He said it was a lymph node. Since then numerous doctors looked at it and dx'd it as a lipoma or a lymph node...
They're not sure what it is. The infectious disease doctor sent me to a surgeon who wasn't sure what it was, but said, "Leave it alone".
It would have a weird throbbing sensation and then my whole body would feel "sick".......This all started in July of 2004........
Whatever this thing is on my elbow is still there in Oct 2008. In August of 2004 I developed a hive like rash all over my body. It wasn't the blister like type of rash but more of a petechiae type with red bumps and blotches. I was getting sicker and had a hard time trying to articulate my symptoms. Many other odd things happened along the way.
Neuro dx a severe vitamin B deficiency. (130 or 140) Went back to PCP for Vitamin B shots. The shots made me feel worse!!! My stomach is all messed up.
Intermittent diarrhea and constipation. Gastro dx gastritis. Before July 2004 I was able to eat any type of food and go to bed on a full stomach with no problems.
I felt as though I were trapped in someone else's body. These feelings were so severe and unnatural.
I never once said that to any of the doctors for fear they would think I was going crazy. I get the feeling they somehow think it may menopause, yet it was all so sudden and severe with intermittent relief.
My gynecologist doesn't think it's a hormonal imbalance causing these symptoms. She tells me that menopause is a gradual process, not sudden and severe.
Sent to endo to dx thyroid nodules!!! What next!!?? Thank God still benign. I swear to God I could feel those things forming in my body when this all started back in July 2004!!!
I could hardly swallow and became lethargic at times. The scariest feeling was waking out of a sound sleep and not being able to swallow. I was gasping for air.
That happened several times in my sleep along with waking up with hiccups that felt like they came from the gut and lasted for 20 minutes.
I was getting frustrated and confused as to which doctor I should be seeing for which symptom. The endo made it clear to me that she will address the thyroid only!!!
I would try and address all of these crazy symptoms to any doctor that would listen. By the time I would get in to see a specialist, some of the symptoms would subside. In Jan 2005 had a Mammo...all clear!!!
Few months later while having a chest x ray they saw calcifications..so back for another mammo. Had surgery...dx LCIS (Lobular Carcinoma in situ). New doctors were added to the list. An oncologist and a breast surgeon. Keeping a record of appointments was becoming a part time job. I'm getting confused about the prescribed treatments..... The gastro rx'd aciphex for the gastritis, but when I addressed the vitamin B deficiency she looked confused herself. One of the side affects of Aciphex is a vitamin B deficiency!!! She looked annoyed.
The endo rx'd a multi vitamin and calcium with D for the osteopenia. The oncologist recommended that I stay away from vitamins. She looked annoyed when I mentioned it. She suggested I heed his advice.
How would I get a vitamin B deficiency in the first place since most of my diet contains foods that are high in vitamin B? The oncologist gave me the option to take Tamoxifen since the LCIS was estrogen positive.
I opted not to take it at this time because of the strange things that are happening to me. Maybe at some point I'll change my mind. For the moment I'm trying to remedy my ailments in a natural way until I get understand what is happening to me.
I have a mole on the right side of my cheek that I was born with. I started to get nervous at some point thinking it turned cancerous and spread down my right arm!!! I go twice a year to have it checked by different doctors.
No one will take it off!!! They say it's OK. Then I began having mouth problems. Perio problems and now mouth sores with strange salt taste in mouth!! I have a super tiny pearl like pimple on my palate that formed. The dentists (4 different ones, along with 3 ENT's) tell me it's OK. A blocked salivary gland. It has been almost 3 yrs and it's still there!!!
In February of 2005, I had a cyst removed from my gum. The dentist prescribed Penicillin VK which I have taken numerous times without any problem. On the way to work I remarked to my daughter that my arm felt great.
All of a sudden out of nowhere I felt as though something hit me and I became extremely weak and felt sick. We had to turn around and head back home. I developed severe bloody diarrhea and would up in the ER. The ER doctor dx as a reaction to the antibiotic.
Needless to say when strep turned up in my urine a year later, (???) I was afraid to take the Penicillin. Dr prescribed Cipro and within a week the urine was clear. I didn't react to the Cipro and strangely enough I felt better. The marks on my face and arm seemed to diminish a bit.
My feet and knees hurt. The right knee and the right side of the ankle in particular have what looks like a sac like swelling on the right side of the bone. The heels and ball of both feet hurt when I get up in the morning.
I would get rashes on both ankles and the top part of the foot. The odd discoloration that is on my arm is also on my right foot. It looks worse when I feel "sick".
My daughter in law was visiting last night and said to me, "What's wrong with your arm?" It is very noticeable to everyone. The strange blotchiness and scratch like marks and these pimply looking things. (real tiny) This extends from my right hand to the back of my ear, including the right shoulder area. The right side of my nose has this strange looking rash of some sort that 2 dermatologists diagnosed as rosasea, which seems to be connected somehow to the fatigue.
I work in a call center and and sit at my desk 7.5 hrs a day taking approx 100 calls a day. The arm motions aggravate the condition. I have always been a well-liked employee who received the best performance ratings in the office. I would carry over almost all allotted sick time as well as vacation time.
Thyroid levels appear normal, but yet I'm freezing at work, most times sitting with my coat and a blanket on. I find myself barely able to keep myself awake at my desk. . My temperature was ALWAYS 98.6. Now it barely gets above 96.6.
Had a root canal which turned into a nightmare.....face swelled up and a huge target like rash appeared on the right side of my face. I have pictures and video....
While attempting to get in touch with the dentist, my PCP calls and tells me that my right carotid artery is blocked 40 -60% and the left is 20-30%!!!!! Went to a vascular surgeon and now on Lipitor......vascular surgeon is not sure why I have these bruise like marks on my legs.... When this all began I lost about 15 lbs. My average weight is approximately 125 lbs.
I have gained about 30 lbs without changing my eating habits. My face has taken on a new look. When I look in the mirror my face appears to be rounded and haggard. I have never been a vain person, just thankful to be in good health, but I just find it hard to believe that I could have aged that quickly. I could see it happening before my eyes.
I have tried not to think about how I feel or look, but instead change my eating habits and exercise more. It's hard to develop an exercise plan when your bones or muscles hurt. I always took pride in keeping a spotless home inside and out, but some days it's hard to keep up with the work. My brother passed away at age 50 with MS and the last 6 years or so of his life we spent in a nursing home amongst young adult paraplegics. . I just keep thinking this can't be old age. I push myself to eat better, exercise, and stop smoking. I feel better for a while....then it starts all over again. What could this be?
July 2007 Infectious disease doctor diagnosed me clinically with Lyme based on EM rash on my right arm. I felt so sick at that time and relieved that someone may finally be taking me seriously. Based on a RBBB from a stress test in the year 2005, the ID doctor ordered an EKG. EKG was normal, 20 days of Doxy, and no reason to return to his office. He told me that I was cured because the blood was negative for LYME after the 20 days of Doxy.
Year 2008 Diagnosed with severe vitamin D deficiency by the endo. She discovered this when my osteopenia was 5% worse from the previous year. D hydroxy was 12. Rx'd Drisdol for 6 weeks, then caltrate (D and calcium) 3 x's per day. Surprised that I would have a D deficiency due to the fact that I spend a lot of time outdoors. We have a pool, a huge garden to take care of, and I try my best to get out and walk when I can. No reaction from the Drisdol, but I feel worse when I take the Caltrate. Endo suggested multi vitamin again. Thyroid nodules are stable.....
Suspicious mammo prompted ultrasound, then MRI's, and needle biopsies. Surgeon and oncologist say all clear!! Oncologist upset that I decided against Tamoxafin and suggested Evista. I want my old self back again. Have another appointment with a different Reumy the end of the month. Wish me luck....
-------------------- shepbud Posts: 8 | From trenton nj | Registered: Jan 2007
| IP: Logged |
posted
wow...... dont know what to say except please persevere with your searth for better health. hugggggggssssssss from Canada
Posts: 234 | From BC Canada | Registered: Aug 2008
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Shepbud,
Please go to the Seeking a Doctor section.
Type in your city and state.
You really need to find a Lyme Literate Medical Doctor.
Your symptoms are highly suggestive of Lyme and co-infections.
You need to see someone who is an Expert at Tick Borne Diseases.
Most of us have been misdiagnosed.
Most of us have had an exhaustive search for what is wrong with us.
I would highly recommend a LLMD.
They will rule everything else out and test you for Lyme disease.
I had my family tested through Igenex, Ca.
One of maybe two labs that I would consider reliable for finding Lyme disease.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
If you go to any more doctors who don't know anything about lyme, you are wasting your time. A person only has so much coping power and you have sure used up a lot of yours. No time to waste now. Do as geneal suggested.
Geez, why do we have to keep getting stories like this from poorly handled patients, people who deserved a lot better from medical practitioners than they got.
So sorry. This is a terrible, and very familiar story here.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Please lissten to Lou and Geneal,
Find a Lyme Literate Doctor and start treating what appears to be TBI's.
Lyme and possibly bartonella by your description of the "scratch marks' on your arm.
As Lou has said, your story is all too familiar here......what a shame.
Best of Luck to you, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
posted
Geneal has it exactly right. Find an LLMD now. You sound like a walking billboard for Lyme.
Posts: 245 | From Tickafornia | Registered: Apr 2003
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
You were clinically dx by a bulls eye rash. That says it all. While not everyone who has lyme gets the EM rash, but for those who do get the rash it is a clear dx of lyme right there. No further tests needed for lyme and tests along the way don't work as in other infections.
The 20 day treatment for doxy, in your case, was tremendous UNDER treatment. In addition to too short of a course, a single drug is NEVER enough as lyme has different forms and stages, each requiring a specific Rx - and combination treatment is required, rotation . . . until the patient is symptom free for a couple of months.
You do need to see a real specialist for further consideration for complete lyme treatment and assessment of other tick-borne diseases (TBD) - or other chronic stealth infections.
Much of what you describe - even the mouth problems - are very common with lyme + co. (co-infections).
Best of luck to you as you find a good doctor and a plan that puts a spring back in your step. It can be a long process, but it can get better.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
If you only get one book, this is a good choice. By an ILADS member LLMD, this holds great information about pharmaceutical treatments and complementary / support measures.
Post in seeking a doc and find someone who'll get you on the road to health. Seriously--your EM rash means that, without a doubt, you have Lyme.
IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Your foot pain etc and marks ,,,highly suggestive of BART!!!
GO see a LLMD,,the best you can afford,,,all else is futile.
Follow the 'Genius' lady called 'geneal's' advice
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
bettyg
Unregistered
posted
we are so sorry for all the crap you have gone thru for all these years and diagnosis!!
you've been thru the mill!!
i was misdiagnosed for 34 yrs. by 40-50 drs. out of my 38.5 yrs. w.lyme.
IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[puke]](graemlins/puke.gif)
![[tsk]](graemlins/tsk.gif)
![[toilet]](graemlins/toilet.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic