Thank you all for providing information to help educate folks. My husband has been sick since 1/7/08 and everything is leading us to Lyme Disease. I posted on the Doctor board to get LLMD suggestions, but would like your opinions on what my husband has been experiencing.
Symptoms: *started with abdominal pain - has never gone away *nausea - sporadic *fatigue *chills *joint and muscle pain - no swelling *mind haze - memory problems, processing, etc. *bowel problems *shortness of breath / winded
Doctors he has seen: *primary care - here's a laugh, said he needed to get more sun and needed an exercise program (it was the dead of winter and he had been exercising regularly - was quite fit before all of this) *Gastroenterologist *Infectious Disease Doctor #1 *Internist *ER *Infectious Disease Doctor #2 *Neurologist *Rheumatologist *Pulmonologist and Cardiologist appts. are scheduled
Tests performed: *Blood workup (multiple) *Urinalysis *Endoscopy *Abdominal ultrasound *HIV test *Two lyme tests (honestly, not sure which ones) *Abdominal CT scan *Colonoscopy *HIDA scan (gallbladder) *Brain MRI *Spinal Tap *Chest Xray (results pending)
Diagnosis: None. The only thing they've found was candida that showed in a deep tissue sample taken from his stomach during the endoscopy (no other signs of candida present - i.e. thrush). Was treated with two courses of Diflucan. All other tests were normal.
Other background notes:
My mother-in-law has Lyme Disease. She tested negative two times through blood test and tested positive through urine antigen test.
My husband was bitten by ticks many times when he was a kid.
My husband supposedly had menigitis in 1993. Hospital paperwork said "probably", so no definitive diagnosis made. He had a rash, stiffness in neck, fever, chills, sore throat. He was given antibiotics to treat. He developed joint pain afterwards. A few months later he went on antibiotics to treat acne (for 4 years) and joint pain went away. No other symptoms then.
December 14, 2007 my husband had two wisdom teeth removed. One had bad infection and he was still suffering pain and recovered by the time he got sick on 1/7/08.
Our theory is that the menigitis was actually the start of Lyme and that the tooth infection and wisdom teeth removal sparked the start of his problems in January.
I would appreciate any thoughts on this. We're continuing to pursue Lyme and any other logical diagnosis and are not willing to accept this is "in his head".
Thank you for taking time to help a newbie!
Posts: 26 | From Virginia | Registered: Apr 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome SMJ...
So sorry hubby is feeling like a skunk. Not good to hear.
You certainly have been put through the wringer too. Sounds like you've gotten the A.B.L.S. diagnosis already.
The Anything But Lyme Syndrome.
Usually when that many doctors do all those tests and still have no clue.. and blame the illness on you.. tell you to get more exercise and even suggest anti-depressents- and or say it is all in your head...
You've got Lyme!
We see it happen all the time.
I wanted to say hey.. but have to quit here. Will try to get back to you soon... but others should be by to say hi too.
posted
I think your on the right track. Good chance that he has had this disease in his body for years.
His prior history, + tick bites + symptoms + strange reactions to taking abx would make sense to any LLMD or Lymee.
Husbands symptoms sound like Lyme and or co-infections. He has had exposure and could have easily been infected, it's more common then you think--
For MOST people Lyme disease is asymptotic. Think chicken pox, herpes, shingles...
Lyme is also a CLINICAL Dx and not a simple blood test.
I'm sure you have read about the inaccuracy of the tests... at best 25% accurate. If you want to increase the accuracy go to Fry or Igenex labs, as they have more strains and sensitive testing, but still not perfect.
Get your lab results for your WESTERN BLOT test and post the results. This tests your husbands blood for antibodies against Lyme. If you have 1-band you have had exposure to Lyme, yet stupid standards say your not positive for Lyme. Again Lyme is a clinical Dx.
GO TO A LLMD and your story will be unfortunately quite common to him/her. It is also common to us here..... you will also get REAL HELP and not the run around.
Get tested for co-infections; Babesia, Bartonolla etc. Look on this board for more details on co-infections, again very common.
Took me 9.5 years to go to LLMD to find out I had all of the above. Now getting treatment and getting better, slowly.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
posted
Lyme sounds like a definite possibility, especially since you've seemed to have ruled out everything else and since he's been bitten by a tick.
I would go see an LLMD. I have many of the same symptoms as your husband. The shortness of breath was from babesia, and the GI issues were from bartonella. He's most likely also dealing with coinfections.
Good luck! Stick around a while.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Dawnee
Unregistered
posted
Welcome! I'm a newbie here also. I have not yet been diagnosed with Lyme but an LLMD has told me he is sure I have it because of my neuro. symptoms.
I have a chiro. appointment in a few minutes but wanted to quickly say that my Dr. thinks I've had lyme since 1988, rebitten in 2003 and got sick and had the rash, and then I started going downhill a few months ago after having a tooth pulled and had to end up with surgery because the root was attached to the bone (ankyloose).
I was in pain and it didn't heal right (still isn't healed right) and I think that just sent the Lyme ball rolling.
From what you describe, it does sound like your husband could have lyme and co-infection. I think you're in the right place and should find an LLMD. The fact that his mother has lyme is an indicator...
Get yourself tested also. My husband and children will be tested if mine comes back positive.
So sorry you and your husband are going through all of this..... looks like he's been through it all....
tell him not to get discouraged.....
finding the right doctor is the first thing to do to get on the road to getting better......
you'll find great support and information on here...as i have....
just wanted to say Hi...... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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daise
Unregistered
posted
hello smjkoj,
Yes, your husband sounds like he has Lyme.
But to know for sure, you must get to an LLMD who is also an ILADS doctor.
Most conventional doctors are so bad we call them ducks. Quack!
Due to problems with testing, Lyme disease is a clinical diagnosis. ANd that needs to be done by an LLMD (Lyme-literate MD) who is also an ILADS doctor.
Someone posted here, I imagine they are sending you an LLMD name. Good. To find other LLMDS and then compare notes and make a choice, you might post in the forum for seeking doctors.
Also, you might make contact with your local Lyme support group and ask them. Local groups can open doors for you.
Sounds like your husband has suffered long and hard. Some here have had Lyme and coinfections for decades.
He may appreciate 2 new books: It's All In Your Head, by PJ Langhoff, Books 1 & 2. These have many stories written by Lyme patients themselves!
Essential: www.ilads.org, to the left menu. click "Treatment Guidelines" and that takes you to Dr. Burrascano's 33 pages of tips for 2005. Print!
Also, above that are the ILADS Guidelines. Print!
Please turn and run like a bat out of ---- at doctors pushing IDSA guidelines. IDSA says chronic Lyme disease does not exist.
IDSA is a so-called "professional" organization that represents your local infectious disease ducks.
LLMD's who are ILADS doctors are our hero doctors who treat us, even though they risk having their medical license taken from them.
IDSA ducks say Lyme is treated with a few weeks of an antibiotic to cure us. Quack. They know this is not true.
It's profits over patients.
The newbie package here contains a wealth of information.
Welcome to you both.
You can come back and post other questions and/or use the "search" function near the top of every page, on the right side, to search topics.
posted
Thank you all! I'm quickly learning and educating myself, so all this information is wonderful. I keep telling my husband there's a reason he's going through this and eventually he'll be able to others as you all are doing.
Posts: 26 | From Virginia | Registered: Apr 2008
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daise
Unregistered
posted
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