Avatar universal

Scared and Frustrated

Note: this may get long. End has the ultimate question - is it Lyme and should I spend the money to go to another state? - and an easy-to-read list of symptoms.

Hello All,
I am fed up with the medical community at large. I grew up on 6 acres of wooded land in VA with lots of horses, goats, chickens, and dogs! My mom was dx with Rocky Mt Spotted Fever in 1984. I watched her deteriorate throughout her life with problems that the drs said must be depression-related. Ultimately she passed away in 2005, after they found 50 + lesions on her brain. They said that she must have cancer. She died a week later.
Now I'm sick. I've been ill for at least 14 years. I've been to numerous drs. It wasn't until this past year that I ever realized that there was a pattern. I was dx with RMSF in college about 10 years ago.

I got married in March and began to become ill with fatigue, extreme headaches, brain 'fade', sore throat, lower back pain, diarrhea, and a low-grade fever. The first dr said that my B12 was extremely low. She sent me to a gastroenterologist who said that I couldn't possibly have a malabsorption problem because I was overweight (I weigh 151 no matter how I eat). He did tests but they came back negative. The assumption was that I don't eat enough B12. Well, since I take vitatims FULL of B12 and eat tons of foods with B12, I didn't think this worked. They decided I needed monthly shots. Said I should feel better in 6 to 9 MONTHS! Huh?! And it ony took into acct my B12, none of the other symptoms.

Then I was sent to a rheumatologist. After over a month and a half of the above symptoms I started having horribe bone and muscle pain. I felt like I was having electric shocks sent through my body. I also had a horrible crink in my neck. Every time I turned to the left I would see huge black spots (so big I thought they were spiders in front of me at first). I still have this - my neck pops every time I move it. I was still having the lower back pain (now severe - felt as if it was stiff). I used to be very flexible (since I was a gymnast for 15 years) and had no problem touching the floor when I bent over. I could sit on the floor and slightly separate my piked legs and lay my stomach flat on the floor with no pain! That was four months ago. I can't even lean over to touch my KNEES now. My knees and elbows are swollen, stiff, and very very sore. Needless to say, the dr gave me steroid injections in my knees to help the swelling. He told me that I had fibromyalgia and osteoarthritis. He gave me Savella and muscle relaxers and sent me home. He also found that my Vitamin D was really low so he started me on high levels of that too. The VERY NEXT DAY I was in such severe pain! I thought that my bones were being pulled apart by my muscles. I would cry if I moved. My husband couldn't even touch me. The doc said to decrease the Savella. My husband and I decided to stop both! I was better within a week. But I was still in pain and had the same symptoms.

Now it has been 4 months of diarrhea, low-grade fever, pain, and general malaise. B12 and vitamin D are still low. I'm having trouble thinking and recalling things. My husband says that I remind him of his grandmother who has early stage alzheimers. It scares him so much. I am so fatigued that I can't move. No one can figure it out. I ended up going to my gynecologist because of something that I thought was completely unrelated - I was spotting a lot more than normal. It started about the same time as everything else, but hey! with everything else going on, it was minor. She read my history AND ACTUALLY LISTENED. She asked what the doctors had done so far. She even said something about the B12 being once a month. She decided to up it to once a week so that I could get back to 'living' as she put it. She did a pelvic ultrasound and was SHOCKED. Apparently my cervix was very very thin - less than half the thickness she would expect at this stage in my cycle. This was interesting to her, and very unusual. She said the only time she saw this was with one case of advanced chlamydia (which I don't have) and a case of disseminated lyme disease. She went back to my history. We spent 1.5 hours in her office behind closed doors pooring over medical history and lab work, as well as my personal history. By the end, she had decided I needed a lyme test, STAT. However, apparently in NC it is taboo for doctors to do lyme tests. She asked if I had family up north. I did so she helped me and my mother-in-law make an appointment in NJ.

My QUESTION - should I drive the 10 hours to NJ to take this test? The dr said that if it was positive I would need to stay a while and that would mean being split from my husband (remember that we are newlyweds).  He also said I should have a spinal tap. REALLY? Is that necessary? I want to know what's wrong but my insurance will only pay for so much, I don't know about being separated from my husband, and I am totally scared! WHAT SHOULD I DO?

Thanks so much for your response.

SYMPTOMS (current)
- lowgrade fever
- muscle and joint pain, particularly knee and elbow
- neck pain and sticking
- TMJD (it's getting worse)
- mouth sores, particularly at the corners of my mouth, that won't heal
- SEVER lower back pain
- loss of flexibity and range of motion
- diarrhea (although this is getting better)
- sore throat (although this is getting better)
- UTI that comes back negative but they still give me antibiotics
- migraines with some problems with nausea
- spots in my eyes (thought they were from my contacts because they kept popping out, but went to glasses and same)
- being treated for bipolar due to depression and 'rapid cycling' mania (mostly due to the irritability)

I've actually gotten all of my records from the time I was a child and noticed that every four to six months from 1996 I have had episodes exactly like this. Some were more mild. In 1998 I had an episode almost as severe. The only thing that the drs could figure was mono since I was in college. Neither Epstein-Barr or CMV tests came back positive (tested over 6 months).

If you have any suggestions, please write! :)
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Avatar universal
Very sorry to hear about all you are going through -- will respond more fully tomorrow, just wanted you to know your message has been received.

No one here is medically trained that I know of, so we can give you comments from our personal experiences, but you will of course have to rely on trained medical personnel for diagnosis and treatment.

Short story:  yes, I would see an LLMD as soon as possible for testing for all likely infections including Lyme, RMSF, Babesiosis, bartonella and a few others carried by the same ticks, if your symptoms would support those diagnoses.  If you have to go to NJ to find an LLMD, then do it, but I'm guessing there are other LLMDs closer to where you are in NC.  Here are some links to websites that may have referral functions:

lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com

and also, if you want to do some reading, there is ILADS [dot] org, which is a main website for LLMDs.  The organization is the International Lyme and Associated Diseases Society (ILADS).  Dr Burrascano's 'Treatment Guidelines' and other good information is collected there (look under the tab 'About Lyme').  There used to be a referral function but I couldn't find it last time I looked for it; it may have been removed.

It's good that you have copies of your old records, and I strongly suggest that going forward you get and keep your own copies of all tests done.

More tomorrow.  Hang in there.
Helpful - 0
428506 tn?1296557399
Yes, if were you I would seek out an LLMD.

Like many, I had to go out of my way (and out of pocket) to get a Lyme ex & treatment.  It was worth it to me, and while I am still not well I am much improved.

Good luck & take care
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