Update - I've now found a doctor 20 minutes away (in Knoxville, TN) who treats Lyme. I'm going to see him tomorrow morning (Tuesday the 27th) but have kept my apt with the doctor in NC just in case I don't feel comfortable with this doctor tomorrow. I'm heading over to the doc forum to see if I can get any opinions on either of them. You guys are AMAZING - I got online this morning and had a full inbox of messages from you all! THANK YOU THANK YOU THANK YOU!
Back to my originial post now...
Hi all - boy, am I hoping I'm in the right place! This is going to be a huge post, but I'm pretty much isolated and without resources here, so I hope you'll forgive the length.
Well, here goes nothin'!
I was just diagnosed with Lyme disease on Thursday by my GP and am pretty much still reeling. She took blood and ordered a complete annual blood workup as well as the ELISA and Western Blot, but she told me she was diagnosing Lyme based on my history and symptoms alone since the tests are unreliable. She didn't actually catch the Lyme - after searching for FMS info and finding it myself, I took an article on Lyme being misdiagnosed as Fibromyalgia to her because I was diagnosed with FMS seven years ago but I remembered being bitten by something and having the bullseye rash eight years ago. I was treated for 10 days with Doxycycline and the rash went away. Until last week I hadn't thought of it since.
This past January I came down with pneumonia and was put on a typical pack of steroids with decreasing dose over six days, plus a steroid inhaler (albuteral) that I've been using for shortness of breath since the pneumonia was resolved. Since January, all of my FMS symptoms have been nearly unbearable and I've had far more pronounced neurological problems (confusion, memory loss, driving to the wrong place, unable to remember words or misspeaking, tremors, tingling hands and feet, blurry vision) and the scariest of all (maybe because it's so visible?) - Bell's Palsy. Mine looks exactly like this: http://healthgate.partners.org/images/si55551851_ma.jpg
Looking back at photos of myself I can see the palsy sometimes, but not all the time and not to the degree it is now.
The long road of misdiagnosis began when I moved to Denver and came down with horrible flulike symptoms. About a month later my hips, knees and shoulders began hurting, locking up and feeling hot. I was so dizzy I had to hold onto walls when I walked around our apartment. I could sleep 10 hours and feel like I'd slept five minutes. I lost all my energy and felt like I had the flu for three months straight. I went to a rheumatologist who ran the battery of bloodwork (but not the ELISA or Western blot) and then diagnosed FMS.
In the meantime I wasn't sleeping regularly or well and my GP put me on a sleep aid that left me so groggy I rarely took it. She put me on several rounds of steroids and NSAIDS for my arthritic symptoms and once for a sinus infection that lasted a month. Every time I went on the steroids I had horrible pain and swelling and my FMS symptoms would worsen for weeks. I lost 23 pounds in 10 weeks and was tested for thyroid problems. Over the next year I gained the weight back.
Four years ago my hair began thinning dramatically and a dermatologist told me it was just hormones. It stopped after a few months, so I didn't think about it again. Hormones were to blame for my menstrual irregularities, too, and I was put on birth control pills for two months to stop a 96 day bout of bleeding. The doctors had no explanation other than hormonal imbalance.
I first went to a neurologist three years ago (for migraines, horrible bouts of confusion, visual anomolies & facial tingling). She did an MRI and said everything was normal for a person of my age (30), whatever that means. She put me on a migraine medicine for my headaches and eye pain (she believed they were connected). She's been treating my migraines with medicines ever since, but isn't even concerned about my palsy, saying that type of swelling could be related to my fibromyalgia. I called Friday and told her about my Lyme diagnosis and she seemed uninterested.
Two years ago I went to an opthamologist for my eye pain, photosensitivity and a bizarre two-day period of double vision. They told me to get a good pair of sunglasses, and that all of my symptoms were likely related to migraines, just as the neurologist had said.
Last year I had swollen lymph nodes that lasted for months - my doctor ran bloodwork and ordered an ultrasound of my neck and thyroid to rule out abnormalities. They found nothing, but she did a thyroid workup anyway (my second one!), which came back normal. The lymph node swelling is back again now, this time having lasted since January (so far).
Over the last seven years I've been seen countless times for random fevers and other odd things like these and was always told it was either a manifestation of my FMS, hormonal imbalance, migraines or was simply inexplicable. I never once was asked if I'd been bitten by a tick or had a rash. I've had some doctors who were determined to help me - two in particular wanted to find relief for me, and the one I've been seeing lately actually re-ran all of the rheumatological bloodwork to see if she could find something that had been missed. She was genuinely frustrated when all the tests came back within normal ranges or negative. She put me on Darvocet in January (it took me a month of horrible pain to concede to take it - I really don't like pain meds at all) and took me off my Cymbalta, which was keeping me awake about 20 hours a day.
Right now I have the following symptoms: Bell's palsy, finger joint pain and swelling, neck/back pain, brain fog (which is getting worse and worse - I drove to our old house two times last week and we've lived in another house across town for 18 months!), hip and knee pain, tingling hands, feet and face, swollen lymph nodes and a fever. My fingers are so bad some days that they kind of lock up and I have to hold my hands in fists to ease the pain. I'm the worst I've ever been right now, have the most symptoms and feel the worst. I'm one of those people who truly can't stand hospitals and tonight I told my husband that if I didn't already know this was Lyme, I'd be heading to the hospital tomorrow, I feel that bad. There are times when I wonder if I'll be able to stand up when I want to, when I can't even hold a book or a spoon, when I'm so confused I retreat to the nearest restroom so no one notices. The palsy bothers me so much and I don't want to go out anywhere because of it.
My main concerns at this point are:
1. I live in east TN and cannot find a doctor who treats Lyme disease. I've tried Infectious Disease docs, integrated medicine docs, hospitals, etc. and can't find ANYONE. ILADS referred me to someone in NC (2 hours away), and I contacted them on Thursday. That office scheduled me to see a Physician's Assistant this coming Wed. and told me they don't do IV therapy for Lyme patients. Everything I've read has recommended IV for patients with my symptoms. I already feel wary of trusting them (not a little because no one has been right YET), and I feel that I should be seeing a DOCTOR, not a PA, for this, *especially* for my first visit. Am I wrong? Should I try oral antibiotics first and risk my neurological symptoms progressing? Honestly, I don't feel like messing around or experimenting. I want to kick this disease as hard as I can, as fast as I can. I want to know what I should be doing - physical therapy for reconditioning? New diet? PICC line for IV antibiotics? I feel like after so many doctors not putting the pieces together, I need to be far more responsible for my own treatment and go into this appointment knowing what to ask for.
2. I have a five year old son, who was obviously born after I contracted Lyme. He's autistic and while high functioning, still obviously has neurological impairment. If the tests aren't reliable, how do I know if he should also be treated? He can't tell me if he has any symptoms because his language is so limited. He *seems* fine, but what if he's experiencing pain or neuropathy and we just don't know? Who in the US could help me decide whether or not to treat him?
3. Expense. While I'm thrilled to have an explanation for all these seemingly unrelated and odd symptoms I've had for the last seven years, it couldn't have come at a worse time. My husband's job just ended and we're paying Cobra premiums to keep our insurance active while he finds another job. In the same breath that we worry about expense, we also say we'll do whatever it takes to get treatment for me and for my son, if he needs it. The doctor in NC is out of network, and while I have really good insurance (our out of network deal is $300 deductible and insurance pays 80% after that), I'm wondering how much of this antibiotic therapy will even be covered. Have any of you faced treatment out of state?
Basically, I'm overwhelmed. I can't find any books locally (checked bookstores and our library and found nada) and I'm wary about online information. I'm in shock, I think - to even think about having a picc line and IV antibiotics for months? I'm overwhelmed. Then again, I'm *ready* to fight - now I just need to know HOW to fight.
If there is anyone on this message board with even the smallest bit of advice or information, please, please email me. I feel so completely on my own here. In truth, I'm both excited to begin getting better and scared that I won't, and that my son is facing the same pain and misdiagnosis that I've faced.
[ 26. March 2007, 01:45 PM: Message edited by: SarahL ]
Posted by cbb (Member # 788) on :
Hi Sarah, Welcome to LymeNet. You'll find that the people here understand what you're going through & how you feel.
I'm so glad you've gotten a diagnosis & that you have an appt on Wed. I understand your concern about seeing the PA & not having IV antibiotics (abx), but don't worry about it. Look at the positives: you've got a diagnosis, you have an appt this week, & you only have to travel 2 hours.
Many of the LLMDs (Lyme Literate Med Drs) have excellent, well-trained PAs. This enables more Lyme patients to obtain treatment. Since appts for LD usually take more time, the LLMDs would not be able to see many patients in a day.
Also, seeing the PA means you're getting an appt much earlier than if you waited for an appt with the LLMD.
As for the IV, there's a lot to be said for oral abx. Combinations of orals can give good results & compared to IVs, the cost is much more reasonable, although some orals can be rather pricey. Be sure to tell the PA about your financial situation. Sadly, for Lyme patients this is common, not unusual.
Some drs prefer easing into the treatment so it's not so traumatic to the body. It has taken years for the disease to reach this point, so things can't be turned around in a short time. Takes patience along with treatment.
When it's working, oral abx can cause a herxheimer reaction (herx for short) that makes the symptoms worse before you get better. Give the orals a try & see how you get along.
Sometimes it takes trying different ones to see what works for each individual.
Most drs also want the Lyme patient on supplements, nutritious diet, some exercise as you're able, etc, etc.
I'm so sorry your son has autism. As you probably know, a mother with LD can unknowlingly pass Lyme to her unborn child.
Recently, I found a website that may be helpful to you. I haven't had time to read a lot of their info, but it may be what you're looking for. Lyme Induced Autism Foundation www.lymeinducedautism.com
Again, welcome to LymeNet. Don't feel alone. You're part of the LymeNet Family now. We'll help you all we can.
Posted by hopeful123 (Member # 3244) on :
welcome sarahl!
i don't know whether you can accept this or not, but your writing is very clear and that is a good sign as far as cognitive issues go!
i know you are going through and have been going through a great deal and it isn't easy AT ALL! try to take it one step at a time with your treatment and most of all your attitude about your lyme. although it IS overwhelming, try very hard to find ways of calming yourself and doing whatever you can to return to a state of calm. stress aggrivates lyme and will not help you get through the healing you need which will get you to another place. a better place.
although lots of people do go on IV, many don't, so don't worry about going on oral antibiotics. also, i agree with cbb, that PAs do a lot of work in the offices of lyme specialists (LLMD). unfortunately, many people do have to travel up to two and sometimes, more hours to go to see their LLMDs. keep in mind that the same clarity you show in your writing, will be an assett in communicating with your new doctor or PA. Some of us were so far gone cognitively, we couldn't communicate well, at all!
i know you will find all kinds of support here at lymenet. it is a wonderful place, full of caring, thoughtful, and knowledgeable people.
you are not alone!
Posted by SarahL (Member # 11452) on :
Thanks for your encouragement - I definitely needed it! Seeing the PA might not be a bad thing at all, but I'm so wary of it on my FIRST visit, you know?
And hey, I'm really proud of that post! My husband helped me write it, actually, but still! It took me about three hours to put it all together - I've learned to always keep a document open on my desktop so I can write and copy down things that are important. We've been creating a symptom and treatment list to take to the LLMD (keeping my fingers crossed that he actually IS one), so I used that to help me write the post. Still, when I reread it this morning, I was proud!
Now, if I could just remember where I live!
Thanks again - I think I'm definitely in the right place!
xoxo
Posted by CaliforniaLyme (Member # 7136) on :
W E L C O M E !*)! !)*)!*)!*)!*! *)!*)!*!)*!!)*!*!!*)!*!)*!!)*!)*)!!
You sound like you have a good GP!! I think the guy who does LymeBlog is in TN!!! Is that right you guys>? McSomething>? I don't have his addy but I think that is where he lives- I have spoken to him on the phone before- he is great!!! He may be able to help connect you to resources if someone else has his addy- if not you can go to the SeekinG Doctors column and post!!
One of the most important htings which your GP may not know is that if you have Lyme you are very likely to have another TBD- Babesiosis, Anaplasmosis/Ehrlichiosis or Bartonella. The majority of Lymed people in my experience tend to have at least one coinfection and they are treated with different abx than Lyme!!!
The GREAT news is that you can get better and that every single person I know who has done longterm abx therapy has gotten better if not 100%. There are also many useful adjunctive therapies like acupuncture and herbal therapies- like Artemisia- a very effective herbal therapy for Babesiosis. A bunch of Lymenetters are trying herbal protocols from this new book by a guy named Buhner but so far the jury is out!!
I used to be really super sick but I am now like normal, 99.9%!!! Everyone I know who ahs stuck with longterm abx has greatly improved or gotten better!!! So look forward to life again- it is there- waiting- sometimes it takes a couple of years before the gains start coming- but it is very worth it-
For example, I used to have fibromyalgia and was in agony 24-7 but I have NO PAIN today except my one remaining symptom a left knee flare premenstrually- my FMS (and CFS IBS MCS RLS and "multi-system progressive neurological disease triggered by post-lyme syndrome" are all gone!! Thank goodness!!!) Hopefully that will happen with you if you can find a good LLMD and stick to a good protocol-
Always nice to see another Sarah!*)!*! Best wishes, Sarah in CA (who used to be a Sarah L (L my maiden name, but am now a Sarah O*)!!!)
Posted by CaliforniaLyme (Member # 7136) on :
p.s. Just looked it up- Sorry!!!- Mac Macdonald is in KENTUCKY but he still may know of a doc near you!! His phone number is 1-859-918-0458 and he is really nice-
Posted by Lymetoo (Member # 743) on :
I also had Bell's Palsey as a co-infection, before I could get diagnosed with (lyme) Borreliosis.
I also had been put on antibiotics to treat a supposed sinus infection, also a steriod nasal spray. I thought I would surely die after thirty days of this. I got sicker every day. The Dr. didn't tell me to take probiotics or an antibiotic for yeast, which is all that can grow in your body if you are on antibiotics. So I was sick with diarrhea from not having any good antibiotics and had yeast in my mouth and I don't know where else because I should have been taking Nystatin to prevent this.
When I finally got to see a LLMD he said that the antibiotics kill the bacteria which are too large to pass through our blood stream so they lie there decaying and putting off toxins which make us sicker.
He also said that it made good sense for the steriods in the nasal spray to make me feel worse as they multiply lyme bacteria.
You have to detox your body. Here are a few things my Dr. told me. I used them to help someone else this will be easier than retyping.
He suggested a sugar free diet because sugar feeds yeast which suppresses the immune system.
Also if you took antibiotics without taking probiotics, the good bacteria that you have to have, you need to replace them with acidophillus or others. Also you need to eat yogurt,or buttermilk everyday.
I hope this can help you. I am also sorry about your son.
You will be in our prayers.
As for my opinion on the IV antibiotics, I was put on oral but my body was so full of toxins I don't think I would have done well on IV, neither did my Dr. He suggests slowly but surely.
I have been on oral antibiotics for 37 months and am steadily getting better.
Sherry Posted by Cobweb (Member # 10053) on :
I was relieved but scared when I was first diagnosed. Wish I'd kept a copy of my first post for the fun of it. I'm not well,yet-just "well-seasoned". Take Care, Carol
Posted by CaliforniaLyme (Member # 7136) on :
p.s.s. Re #2 your son- my daughter had an autistic Lyme presentation and is totally niormal now- I personally believe it was the Babesiosis that gave her that presentation- there is a foundation called LIA which is having its first conference in Irvine, California in June called the Lyme Induced Autism foundation- here is contact info- Tami is great-
Contact information: Tami Duncan Lyme Induced Autism Foundation (951) 817-1173
###
What worked for my daughetr within TWO weeks was CEDAX- a liquid cephalosporin!!! She was dramatically different in 2 weeks- back to how she had been before!!! Would his physician consider a challenge>? Also consider this article-
Possible Short-Term Benefit In Treating Autism With Antibiotics
CHICAGO, IL -- July 18, 2000 -- Researchers at Rush-Presbyterian-St. Luke's Medical Center in Chicago have shown that some children suffering from autism may experience short-term but dramatic improvement during treatment with appropriate antibiotics.
The study was published in the July issue of the Journal of Child Neurology. The researchers report that when a subset of patients -- whose autism may involve colonization of the bowel by certain bacteria that produce a toxin -- were treated with antimicrobial agents, most experienced short-term improvement of their autism symptoms.
The journal article is authored by Dr. Richard Sandler, director of pediatric gastroenterology at Rush Children's Hospital, part of Rush-Presbyterian-St. Luke's Medical Center in Chicago. Other key contributors are Dr. Sydney Finegold, professor of microbiology and molecular genetics at the University of California at Los Angeles Medical School and Ellen Bolte, mother of a child with autism. The Veteran's Administration Medical Center in West Los Angeles also contributed to the study. Autism typically occurs before two years of age and involves loss of language, social and play skills. According to a study just completed by the Centers for Disease Control indicates that autistic spectrum disorder affects an estimated one in 150 children.
"Autism is a devastating disorder with essentially no meaningful treatment," said Dr. Sandler, the paper's lead author. "Seeing most of these children apparently improve significantly was very exciting." However, Dr. Sandler cautioned that "the work needs to be repeated by others, although it presents intriguing evidence suggesting a fruitful line of research towards a possibly effective prevention or treatment strategy in a subset of autistic children." Dr. Sandler suggested that "the next step, besides repeating clinical studies, is to go to the lab and try and find out why these effects may have been observed."
The initial hypothesis was the result of years of research by Ms. Bolte, whose son developed autism at 19 months of age following several months of broad-spectrum antibiotic treatment for fluid within the middle ear. "It is possible that certain neurotoxin-producing bacteria may find favorable growth conditions if the protective intestinal flora has been disrupted by broad-spectrum antibiotic treatment," Ms Bolte speculates. The hypothesis, although unconventional, may revolutionize the way autism is viewed. "It was not long ago that patients diagnosed with peptic ulcers were advised to watch their diet and reduce stress. Now, it is well-established that most peptic ulcers are caused by Helicobacter pylori (a bacteria) and can be cured by antibiotic treatment," she said.
"I didn't believe in Ellen's theory when she first presented it to me," said Dr Sandler. "But I thought it's strange enough to be true, and decided to test it." Dr. Sandler treated Ms Bolte's son, and he appeared to improve significantly. "After that," said Dr. Sandler, "we tried to design a careful study to test this hypothesis in other kids."
In this study, nine of 11 children treated with the antimicrobial agent experienced improved cognitive function, behavior and social skills. The improvement was at times impressive. Unfortunately, regression usually occurred, often to the pre-treatment status.
"Additional research should address whether there are better drugs for this treatment, how long therapy should be continued, and what can be done to prevent relapse once treatment is stopped," explained Dr. Finegold. "Many questions need to be answered, " said Ms Bolte. "These include identifying the possible mechanism of benefit, and properly identifying which autistic children follow this pattern."
Dr. Finegold also emphasized that the investigational therapy used in this trial, orally administered vancomycin, is not recommended for general use because it would encourage further development of resistance of various bacteria to it. "The growing resistance of microbes to this drug is already a major infectious disease and public health problem," said Dr. Finegold. "Autism is heartbreaking, " said Ms Bolte. "These results indicate that further study of a possible connection between intestinal bacteria and autism is warranted. Additional research will hopefully lead to meaningful prevention or treatment in a subset of children afflicted with autism."
Posted by SarahL (Member # 11452) on :
CaliforniaLyme - I'm pming you about this - also, should you maybe start a thread with this info? There may be others who need to know! I hadn't heard of it before and I try very hard to stay "up" on all the studies, etc.
I'm reeling from this possibility and pming you with details!
Sarah
Posted by SarahL (Member # 11452) on :
Gah! CaliforniaLyme! Your mailbox is full and I can't send you a PM! You can email me at [email protected] if you can't empty your mailbox. Want to talk LIA if you have a few minutes to spare...
Thanks! Sarah
Posted by CaliforniaLyme (Member # 7136) on :
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It took me about three hours to put it all together - I've learned to always keep a document open on my desktop so I can write and copy down things that are important. We've been creating a symptom and treatment list to take to the LLMD (keeping my fingers crossed that he actually IS one), so I used that to help me write the post. Still, when I reread it this morning, I was proud!![[Wink]](wink.gif)
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