posted
Hi! My name is Anna. I just turned 21 and was just diagnosed with Lyme. I'm just looking for a little guidance or advice, and wanted to share my story so far...
I was first tested for Lyme when I was 4 years old, when I came down with some nasty arthritis in my left ankle. The results for Lyme were "mildly positive", but the doctors diagnosed me with Juvenile Rheumatoid Arthritis even though I tested negative for rheumatoid factor (or whatever it is!). However I tested positive for antinuclear antibodies. My current doc thinks it's very possible that I've had Lyme this entire time (16+ years!).
I don't remember much about my early childhood, but I know I had an assortment of strange problems. In middle school I developed a "stiff neck" that wouldn't go away and (like many of my symptoms) never has, really; it comes back on my "bad" days. It persisted day in and day out for about two or three years. Nobody could figure out what it was. They made me do exercises at home, which didn't help, then sent me to a therapist (?!). Obviously that was a dead end, but after a while it sort of subsided. Also throughout middle school I was constantly missing school. I had a low-grade fever (99-100) for weeks at a time, and became increasingly depressed. Around this time (~12 years) I also became anorexic.
When I first started menstruating at 14 I found my cycles were incredibly irregular--I would literally bleed every day. Later (16) I became VERY VERY anemic and they put me on birth control pills to regulate my cycle. It took about a year for the anemia to go away.
At 15, in addition to my anorexia, I developed bulimia. These disorders still plague me to a lesser extent today (moreso the anorexia).
When I was 17, right after I graduated from high school, my gynecologist found what she called a "softball-sized" growth attached to my ovary. I went in for a subsequent MRI where they told me that it was actually the size of a bowling ball! I had to go into surgery and have it removed; it was as big as a human head and was attached to my fallopian tube, which had to be removed (they left the ovary). Luckily it was benign--they were concerned about it being cancerous.
At 18 I suddenly started having pain in my elbows and ankles. I went to see a rheumatologist, who couldn't figure out what was wrong with me! He tested for Lyme again; I was "mildly positive" once more. He put me on a 2-week course of antibiotics (the doxy-one) and sent me for physical therapy for my elbows and to a podiatrist for my ankles.
The physical therapist determined that I actually had tennis elbow in *both arms, both ways* (hyper- and hypoextension, I believe)...without ANY cause. But these problems sort of subsided after a while too; I have to wear a particular kind of shoe and can't do any arm exercises or heavy lifting, or the pain returns.
At 19, I started getting these infections--and constantly. Yeast infections and Urinary Tract Infections. I get them every two months or so. My OBGYN thought they're because of the birth control pills, but I switched the prescription brand a couple of times since then. I've also had some sort of sexual dysfunction, or something...maybe "problems" would be a more accurate description, but I don't want to go into that here.
This summer I came down with mono. I didn't become any more fatigued than I've been in the past; it wasn't a real change for me, but I've waited it out (it's been 4-6 months). I don't even know where I got the mono... I never share drinks and I've only been kissing one person!
The fatigue has been around for a while, but it really began picking up around my mid teens (and especially following the anemia). I sleep all the time now and take naps. I miss classes constantly. I've had to quit every job I've had because of it. This is one of my biggest problems; it affects my ability to do ANYTHING. I'm not in pain, but I'm always so tired... And then there's the brain fog.
I don't really know when the "brain fog" began. It's been slowly getting worse, notably so over the past few years. I just can't concentrate, or learn, or speak, or even read the same way I could when I was younger. I have a terrible time participating in class. A couple of weeks ago I was called on to summarize a story for my fiction class; I was silent for about 20 seconds, I just couldn't think of ANYTHING to say, couldn't recall the plot even though I had JUST READ IT the night before, so I mumbled "I'm sorry, I don't feel well" and the prof called on somebody else. My short-term (or long-term, really) memory is REALLY bad. I feel as though my brain is moving in slow motion. I can never grasp the concepts or the words or the formulas I want to. I wanted to major in biology but I had to give up because it was just too hard to try to learn the math, so instead I'm majoring in classics. I know I could be such a smart person, I have so much potential, and this is making me miserable; I feel so stupid...
The depression is quite crippling also. I saw a therapist for a little over a year (just ending earlier this year), with no real effect, and a psychiatrist for a brief amount of time as well. They didn't think there was anything seriously wrong with me; the psychiatrist gave me some Paxil to treat the depression, some anxiety, and a bit of OCD-type thing ("trichillomania" I believe, where I tweeze and dig the hairs out of my leg, for hours at a time, to the point of drawing blood--yeah, weird). The Paxil actually increased my suicidal tendencies (which don't come often), so I stopped taking it, scared, and stopped seeing him since neither of us thought it was really necessary. It just didn't seem to help.
Lately my problems have been with my eyes. I'm very sensitive to light. My eye doc says it's viral conjunctivitis, it's been around for a little over a week, but I hope it goes away soon!
Oof, I THINK that's it! I apologize for writing so much, I didn't think I would write so much. If you've read this whole thing... thanks so much. I'm so desperate for some help. I just want somebody to look at my history collectively and get some opinions. I'm so confused about all of this; do you think it could all be related? The cyst, eating disorders, the whole shebang? If not, I apologize again for writing way too much...
My doc gave me a prescription for IV Rocephin for 4-6 weeks. I can't start it until winter break (about 2 more months) because of classes and all. He said that this often results in the removal of the gall bladder? Do you think this will be long enough? Will it hurt to wait at this point...can I get worse in such a short time? I don't know how I'm going to afford it if it's not long enough; I'm pretty sure my insurance doesn't cover it (I'll find out tomorrow!). I'm going to try to get into a study here, mostly so I can benefit other people. Would you suggest any other kind of treatment?
Again, thank you soooo much. And I apologize for blathering! Nice to meet you all! Posts: 20 | From Frederick, MD | Registered: Oct 2005
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Welcome to Lymenet. I hope that you come to a speedy recovery. While you are waiting to do an I.V. drug, why not start on an oral antibiotic? They can be just as effective as I.V. drugs.
Rocephin would not be my drug of choice, just because it can cause gallbladder problems, but for some people it works well.
Are you seeing a lyme literate medical doctor? If not, click on Seeking a Doctor" and look for one in you state. Also go to Medical and make sure you click on the newbies site posted by Tree Patrol. Blessings. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8896 | From Illinois | Registered: Aug 2004
| IP: Logged |
On page 8 of my copy, he says: "In many of my patients, cysts are found not uncommonly in various locations: thyroid, breast, liver, bone, ovary, skin, pineal gland, and kidney...."
I recommend you print a copy (about 13 pages) & you can read a little at a time, highlight, underline, write in the margins, reread, etc.
How was your diagnosis of Lyme disease made? Are you taking any oral antibiotics now?
Many of the Lyme Literate Med Drs (LLMDs) are treating with oral antibiotics (abx) and then trying combinations of oral abx. Some patients respond well to this approach. If not, then they go to IVs.
Have you been checked for Co-Infections? Symptoms for all Tick-Borne diseases are similar, but generally speaking, they require different meds.
As Hiker said, you need to be sure that you're seeing a real LLMD, not just someone who treats Lyme. The patients seen by LLMDs are almost all Lyme patients, or more correctly, they have Tick-Borne Diseases (TBDs), so the LLMDs have so much more experience to draw from.
Go to Seeking a Dr here on LymeNet. Put your location in the title. We don't give info about drs here, but info can be e-mailed or sent by PM (personal or private message - I forget what it stands for).
On the left, go to Support Groups & check those in your state and surrounding areas. They should be a good source of info on LLMDs.
If your dr is recommended, then you're truly blessed. If not, then you may want to seiously consider changing to a LLMD.
Keep in touch & ask as many questions as you need to.
Posts: 4638 | From South Carolina | Registered: Mar 2001
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Welcome Anna!!
Please read treepatrol's list for newbies at the top of the medical questions. There is lots of good info there.
I have been on IV rocephin since June 9th. My problems are not near solved, but my brain fog has lifted dramatically. I have not had any gall bladder problems, and I sure hope I continue to have that good fortune.
I do like hiker's suggestion of starting on oral antibiotics until you can get the IV rolling. And do find a good LLMD.
Best wishes....
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
All of the above suggestions are good ones. Your very first order of business is to find an LLMD. I see you have posted in Seeking a DR. Good work.
As far as the Rocephin ..... if you do take it, ask for Actigall with it. This can save your gallbladder. As others have suggested, trying oral ABX before rocephin may be better. Again, an LLMD needs to help you decide this.
Getting to an LLMD as soon as possibe is gooing to be your best bet.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
| IP: Logged |
posted
Thanks so much guys! The information you gave me is very helpful. Hopefully I can find a doctor more familiar with Lyme soon... Posts: 20 | From Frederick, MD | Registered: Oct 2005
| IP: Logged |
I agree that you should try oral abx now.....and be SURE to follow any IV abx with orals, or you will relapse for sure. Rocephin is known for its relapses, so please find a dr who knows these things.
And ditto on the Actigall...or you'll likely be facing another problem.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
quote:Originally posted by hiker53: Welcome to Lymenet. I hope that you come to a speedy recovery. While you are waiting to do an I.V. drug, why not start on an oral antibiotic? They can be just as effective as I.V. drugs.
Rocephin would not be my drug of choice, just because it can cause gallbladder problems, but for some people it works well.
Are you seeing a lyme literate medical doctor? If not, click on Seeking a Doctor" and look for one in you state. Also go to Medical and make sure you click on the newbies site posted by Tree Patrol. Blessings. Hiker
Ditto, and, IMO, the better choice would be to start out on orals. And, if I had to do it all over again, I would NEVER use IV Rocephin, never, ever. Research has shown where when Rocephin was introduced, the spirchetes go into another form, only to hid there and come back out when Rocephin is removed.
That is why so many who have done IV Rocephin, relapse, quickly most often, no matter how long the Rocephin was administered.
I am symptoms free today after over 36 months of many different antibiotics. I got the least benefit out of IV Rocephin...so I am speaking from experience, just because it is an IV, doesn't make it better or more effective.
The above is only my opinion and I am not a medical professional.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
W E L C O M E ! ! ! ! ANd Congratulations*)*!)!!
Just imagine- you could have gone another 20 years of misdiagnosis!!!!!!!!!!!!!!!!!!!!!!! Instead, you get to get better when you are young*)!!!!!!!!!!! And go on and live a fun life again- the way it should be!!!!!!!! It can take a while to get to feeling good again, but it is worth it. SOunds like you have a good start with the Rocephin!!! Welcome & take care- Best wishes, Sarah in CA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
bettyg
Unregistered
posted
Yikes, so sorry you have been thru so much for your young age.
Welcome to this 24/7 educational & support group board, www.lymenet.org ! Here's TREEPATROL's and TINCUP'S combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this. Treepatrol constantly adds new links as they become available from the members here.
print & read Dr. B's (a lyme literate MD) info first; you will come back to this often. MAKE SURE IT'S THE NEW 9-05 VERSION RECENTLY PUT ON THIS BOARD!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
Some guidelines from Betty/others on using this message board:
* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.
* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.
* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.
* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.
* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out!
* Also, we have ``lyme'' disease; not lymes... We are ``lymies''.
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)
![[Eek!]](eek.gif)
![[confused]](graemlins/confused.gif)
My doc gave me a prescription for IV Rocephin for 4-6 weeks. I can't start it until winter break (about 2 more months) because of classes and all. He said that this often results in the removal of the gall bladder? Do you think this will be long enough? Will it hurt to wait at this point...can I get worse in such a short time? I don't know how I'm going to afford it if it's not long enough; I'm pretty sure my insurance doesn't cover it (I'll find out tomorrow!). I'm going to try to get into a study here, mostly so I can benefit other people. Would you suggest any other kind of treatment? 
Printer-friendly view of this topic