Need help! Diagnosed today with Lymes disease

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krob
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/9/2009 10:11 PM (GMT -6)   
Hello everyone,
 
I am new here and was just diagnosed today with Lymes Disease. I have been extremely tired and exhausted to the point of tears for a very long time. I went to the doctor and was told that there was nothing wrong. I went back again and was told that I was aneimic. Of course the tiredness persisted. I them developed a rash that cause me to itch  all over. They were in different shapes and sizes. They started off small then got much bigger. They were various shapes and sizes some were even just a line that resemled a scratch while others were round and even triangular. I was miserable for at least 3 weeks. In fact this also presented itself last year and treated as contact dermatitis so I assumed it was the same. After the itching stopped the marks became dark purple.
 
After that episode I started getting severe headaches but I just assumed they were migrains. I started noticing I could not remember anything. I just thought it was as result of me not being able to sleep. Then there was the tingling sensation on the right side of my face and head, twitching and pain shooting up my right arm and not to mention the aches and pains just all over. I was starting to become just plain old depressed because the doctors kept saying they did not see anything wrong and that maybe it was all in my head when someone told me to ask my doctor to do lupus test. She relunctantly ordered it and then decided to throw in a lymes disease test but was certain it was not any of the two.
 
Here we are 2 days later early in the morning while I am getting my daughter ready for school and myself ready for work and just totally throws me for a loop and tells me I have lymes disease. Of course being ignorant I was devastated. After I got over the initial shock I was happy that it was not lupus.
 
She told me contact an infectious disease doctor and wrote me prescription for doxicycline. Should I really take this before seeing the infectious disease doctor?
 
Anyway after my long winded story, I wanted to know your thoughts on my lab results and find out if anyone know of a good specialist in the Rockville/Gaithersburg/Germantown, Maryland area or just the wash dc metro area. Here are the results:
 
IGG p41 ab   Abnormal Present
IGG p66 ab  Abnormal Present
 
IGM p23 ab Abnormal Present
 
Any information you can provide would be much appreciated. I am really concerned about this memory thing
 
Thanks,
 
Kerry

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/9/2009 10:20 PM (GMT -6)   
Hi Kerry,

Welcome to the forum! I'm so sorry you found us this way.

The symptoms you described sound like Bartonella. You need to find a good Lyme Literate Medical Doctor and get tested for all co-infections. I wouldn't waste my time with an Infectious Disease Doctor unless they are Lyme Literate.

You can email one of our long time members, Ticker at:
ko_@bellsouth.net to find an LLMD in your area. If you'd like more suggestions, you can email: stephanie@turnthecorner.orgYou can also go to: www.turnthecorner.org/bod.htm and ask for further suggestions and also get some information about Lyme Disease. 

ILADS is also a great site to find information and learn even more about Lyme Disease and the correct dosages for antibiotics, etc.
http://www.ilads.org/


For even more info, please read the topic at the top of the first page of this forum tittled, "The Basics, Newbies check this out". It will help you get started learning about lyme.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/9/2009 11:09 PM (GMT -6)   
Hi Krob!

Personally, I would stay away from any Infectious Disease docs., unless they were LLMDs. And it would be best for you to get in to see a LLMD asap.

So sorry that you have now been included in our little world, but you came to a great place! One of the many things that you can count on from this site is understanding & confirmation that you are not alone in this!

I'm having some pretty serious issues with my memory & have been for a while. Some say that the memories are still there, the brain just can't access them at that moment.

Do you remember a tick? The sooner you get treatment, the sooner you will be better.

May you find peace & healing along the way...
Trav
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 9/10/2009 3:01 AM (GMT -6)   
Hi kerry,

Welcome to the forum. Sorry to hear you are not well but happy you found this forum. You will find this place very helplful and informative.

I agree with the advice given above.

Ask for references for good lyme literate medical doctors and then make an appt. as soon as possible. Take the med. since it was offered to you to get you started. If the appt. is a long way off, ask to be put on a waiting/cancellation list because it may get you in much quicker than expected. Ask to be tested for all the "coinfections". It sounds like you may have both lyme and Bartonella, but could easily have more than that. The "dirty" bug bites can transmit more than one infection during the single bite.

Keep track of your symptoms and the "time table" of your experiences. Bring with you to your first appt.
Make sure you get copies of all your blood tests etc. and keep them organized in a file box or binder etc. so that you can copy or retrieve them as necessary. Take pictures of your rashes and put a ruler or coin next to the rash when taking the photo in order to give it size definition. This documentation will help your llmd better assess your infections.

You are not "crazy", your symptoms are real, and you just need a good doctor to help make sense of it all. Best wishes to you, bablymers mom

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 9/10/2009 7:05 AM (GMT -6)   
Krob - Welcome to the Hotel California.... you can check out any time you want, but you can never leave!

Find the best Lyme Literate doctor that you can. At the beginning, instead of bouncing from dr. to dr., it's MUCH easier to just strt out with a LLDr.

Hope this helps.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
10/01- Igenex and CDC LD positive
Rx's: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
 


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/10/2009 8:16 AM (GMT -6)   
JELAINEP said...
Krob - Welcome to the Hotel California.... you can check out any time you want, but you can never leave!


idea How very appropriate, Jelaine!!!
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/10/2009 11:36 AM (GMT -6)   
lol Jelaine! It's been a while since you said that. Your a nut girl!
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


krob
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/10/2009 2:19 PM (GMT -6)   

Thanks so much for all your support. I found a doctor from someone on this forum that I emailed directly and coincidentally an ex-coworker that had lymes (now cured) went to the same doctor so I will give them a call. The problem is they do not take my insurance. mad

If anyone knows of any LLMD's (took me forever to figure out what that meant :-) ) in the wash/dc area please let me know.

This so much for me to process. I have a demanding job, demanding kid, demanding husband and I guess now a bloody demanding disease. Arrghhhh!!! But this too shall pass!

 

Kerry


bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 9/10/2009 2:33 PM (GMT -6)   
Hi Kerry,

The doc will probably give you a "super bill" that you can turn into your insurance for reimbursement. Ask about that. Great news that you found a doc so soon and with a good track record.

Be good to yourself. The disease is demanding and you will need all your strenth to stay in the fight. Maybe some of the other "demanders" can lighten up a little in order to help you "be first" for awhile.

Best wishes, bablymers mom

gorbybelle
Regular Member


Date Joined May 2009
Total Posts : 147
   Posted 9/10/2009 2:33 PM (GMT -6)   
Hello - sorry to hear you have lyme - if I were you I would start the antibiotics straight away - then if you can locate a lyme literate doc. [llmd.] I would do that.

You are lucky to have a 'main-stream' doctor that got you tested, etc; but an llmd. knows the 'whole picture' of lyme - it can be difficult to 'cure' lyme but I know of many folks who have been cured - it usually takes the knowledge of an llmd. as there can be co-infections that complicate treatment - this is not always the case.

You may feel worse once you start your meds. this is known as a 'herx' [google 'herxhimer reaction] - also watch for any 'allergic type reactions' from your meds. - you can find plenty of info on individual drug side-effects - just 'google' the name.

It is recommended that you take 'good bacteria' daily - 'acidophilus / live yoghurt' are good sources.

Best Wishes - Gorbs.
Best wishes
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