posted
In early Sept, over the course of a few days, I felt like I was getting the flu (everything but throwing up).
A week in, I felt so horrible and running a fever (everything from muscle aches to the worst fatigue in my life to heart issues), I went to the doc who said despite the absence of a bullseye, he strongly felt I had Lyme (and he added he treated more people for Lyme this year than the last few years combined).
He had me take a Lyme test, explaining the test might be negative since I might not have enough antibodies in my system. It was negative but he put me on 3 weeks of Doxy just in case.
I felt much better within a week, but two more weeks in, due to side effects (including two visits to the ER within two weeks for unexplained a-fib), he took me off of it.
Within a few days, I was worse again to the point of not being able to work (severe fatigue and cognitive issues).
He had me take a second Lyme test (despite knowing that you can test negative after being on antibiotics). It was negative and he sent me an email that basically said,
"Everything looks good! Take care!" (*insert crickets here*). I look great on paper, so there can't be anything wrong with me?
Since that time, trying to figure out what's wrong with me since I "couldn't possibly have Lyme," [even though I have pretty much every symptom].
I've asked my primary care doc to send me to anyone who can help me. I've been to everyone from cardiologists (who suspects a sleep disorder) to pulmanolgists (who told me it was all in my head, that only "morons" try to out-think illness, and suggested maybe I'm bipolar ?!??)
to neurologists (who also want me to take a sleep study or put me on narcolepsy meds despite my not having any symptoms of narcolepsy) to gynecologists (to test for early menopause and other issues).
I've been blood tested for everything from RA to cortisol levels to lupus, thyroid, you name it.
I have been off of work since mid October, wake up feeling like I'm 90 and hungover, can't function and most of the time and I'm too tired to even read or watch TV.
I have splitting headaches, muscle aches as if I worked out the day before and keep having episodes of vertigo.
I'm usually very mentally sharp (one co worker once commented that I say one-liners while other people are still thinking of a joke).
Now it takes me forever to think of stuff and I'm seriously absent minded, losing things, and doing things like stopping for green lights -- on days I dare to drive.
Most of this time has been my waiting weeks for specialist appointments who then make me wait weeks for tests. In a week, FMLA will have been used up and I'm no closer to being healed than I was in early September.
I live in a really small town and even average "specialists" are an hour away. Like a lot of people here, I am absolutely at the end of my rope and thousands of dollars poorer due to medical bills even with insurance coverage.
I'm now scouring the internet looking for anything I can on Lyme. There is no way I was fine one week and not the next and it's all in my head.
In the past two months, I've given up red meat, dairy and white flour products. Sugar, eggs and processed foods (including sweeteners) are next. I've ordered everything online from adrenal support supplements to iodine to (arriving today) cat's claw and Japanese knotweed.
Do I know what I'm doing? Absolutely not. But I'm so desperate to even feel 10% better, I'll do just about anything at this point.
To the doctor who said this may be caused due to "mental issues," it's quite the opposite. NOW I'm depressed because I don't remember what it was like to feel okay and everything seems hopeless.
Thanks for "listening" to anyone who read this (it took me forever to type). I just needed to vent and explain who I am here.
.................................................
Breaking up the text for easier reading for many here -
[ 12-18-2014, 02:28 AM: Message edited by: Robin123 ]
Posts: 2 | From Virginia | Registered: Dec 2014
| IP: Logged |
posted
Moving this to Medical Questions for more help...
WELCOME!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
You are not alone, we've all been there.
Treating lyme is complex, so the first thing is to find a lyme literate MD (LLMD). You can go to "Seeking a Dr" and post. Also look for lyme groups in your area (google/search). Only a lyme literate doc will do (cutting edge). You can also go to www.lymediseaseassociation.org and they will email you some names, but you want to bounce them off another lyme patients first.
There is a good book by Stephen Buhner called: Healing Lyme. Also another great book called: Cure Unknown (Weintraub). Buhner's book is good (one of many), and will introduce you to using herbs to treat lyme (some people swear by them). Others swear by abx. At least you can try the herbs while you wait to see a lyme doc.
When setting an apt with an LLMD, make sure to get on their cancellation list, that way you won't wait as long (I was able to be seen in 3 days).
You might want to start going gluten free now. Gluten is really bad for lyme patients. It's actually bad for everyone, people just don't know it (various reasons).
Also, I know you're new here and it was probably all you could do to get it all out, so just a kind suggestion, it is hard for many with lyme to read single spacing, so making your paragraphs smaller would be easier for all of us to read, otherwise, some people will pass your posts by.
Here is an award winning documentary on lyme. Lyme is different for everyone. It does different things to each of us (genes), but some symptoms we all have and recognize right off. You're in the right place. Welcome to Lymenet. Great people here and tons of info.
Keep in mind that some of these people are in bad shape. That doesn't mean you will go down the same path. We are all different.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
Welcome. Avoid steroids until properly diagnosed as if you do have lyme it can make recovery much more difficult. You came to the right place,good luck
Posts: 342 | From northern california | Registered: Dec 2010
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Tick bites deliver much more than Lyme. You are pretty much guaranteed to have the three Bs: Borrelia (Lyme), Bartonella (Cat Scratch Fever), and Babesia (malaria-like piroplasm).
And possibly Rocky Mountain Spotted Fever, Erlichia, Tularemia, Q Fever, various viruses...
You are as sick as you feel. I'm sorry.
Can the specialists. They mostly want to hear how special they are. They have nothing to offer you.
Find an LLMD. Travel. Get on waiting lists. Whatever it takes.
Do a search on Babesia duncani. Your symptoms sound like this strain. It is incredibly virulent.
If you want to start herbs, the Cat's Claw and Knotweed are good places to start.
For Babesia, think Artemisinin, Cryptolepsis, Grapefruit Seed Extact. You can find these online.
You are in trouble, but as your symptoms are still acute, you can fully recover. But you MUST have the right doc. Don't resign yourself to the he!! that is chronic tick-borne infections.
Welcome to the club. Sorry you have to be here, but you'll be happy we exist.
posted
Definitely get to an LLMD as soon as possible. Also, I recommend getting the Borriella Western Blot from IGENEX.
Like you, I started feeling horrific overnight. It took me a while to figure out what was wrong. My symptoms seemed to match Lyme and Bartonella.
I had awful flu-like symptoms with horrible head to toe body aches that I could not seem to relieve with over-the-counter anti-inflammatories (among other symptoms).
I had a few doctors make me think I was crazy for thinking I might have Lyme. I'm so happy I went with my gut. I had a positive IGENEX Western Blot.
It sounds like you have a somewhat similar story. Make an appointment with an LLMD even if you have to travel and get re-tested.
It's hard feeling so lousy. Hang in there and get in to see an LLMD.
Posts: 20 | From Orange County, CA | Registered: Aug 2014
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I hope Under Our Skin didn't scare her off. Maybe she's watching it. Hang in there Tracy!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
More things for a doctor to look into:
Chronic Fatigue Syndrome - A Roadmap for Testing and Treatment
posted
Glad you made it here - your initial symptoms and ongoing symptoms are typical Lyme symptom, as well as your run-around and the mental health comments - it's very exasperating when we're actually dealing with being ill.
Question about the splitting headaches - sometimes people with the co-infection ehrlichia report having big headaches - could people please comment as to whether Lyme can cause bad headaches? I don't get them.
You need to see a good Lyme doctor - you can ask in Seeking A Doctor for what areas you're looking for.
Support groups are listed at the left with Support Groups - click on United States, Virginia.
Treatment takes place in three categories - kill/deter the organisms, detox, and fortify the body. We're all different when it comes to what will work for us. It takes patience, but when we connect with the treatments that are right for us, we can start to get our life back again.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Hi Tracy!
We understand your symptoms. They are so very familar to us.
Instead of wasting more money on doctors who deny that you have lyme, be evaluated by a good Lyme Literate Medical Doctor.
Click on "Seeking a Doctor" on the "Hop To" below to find the closest LLMD near you.
Also, the links below can offer additional help while waiting for your first appointment with a LLMD or can be used if you are very low on money.
But seeing a LLMD is very important, so try to find a way to pay for one.
Also, Dr. Phil did a very informative show about Chronic Lyme Disease and the problems patients are facing in finding doctors who believe they are sick. It can be viewed online.
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!
![[Smile]](smile.gif)
Printer-friendly view of this topic