LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » A disease identical to Lyme -finding proof sarcoidosis is LD?

 - UBBFriend: Email this page to someone!    
Author Topic: A disease identical to Lyme -finding proof sarcoidosis is LD?
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830

Icon 1 posted      Profile for lymebytes   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have been doing some research on herxing for an article for my site.

I came across a disease I have never heard of called sarcoidosis. This disease is exactly like LD and they even "herx" on antibiotics. There is also a "neuro" form of this disease.

Much like Lyme many sites don't give the full picture or all the symptoms possible.

Then I was told about Karen Duffy who was a VJ on MTV in the early 90's and actress was diagnosed w/ sarcoidosis, she has the "rare neuro form". Read her CNN interview and tell me if this doesn't sound like LD: http://tinyurl.com/23zp6t

Next I found this: "Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis" this is a quote about Bartonellla - can be read here under "heart" - http://www.lymeinfo.net/bartonella.html

I have visited and read their forums, they talk about herxing, but their doctor's don't allow them to herx, by pulsing low doses saying it is safer than "herx shock". I even found their treatments interesting, treated with the macrolides and tetra's.

Anyone know if this disease is ever mistaken for LD or vice versa? Anyone ever even heard of this disease?

Edit: Found this today:

Borrelia burgdorferi may be the causal agent of sarcoidosis
Hua B, Li QD, Wang FM.

Naval General Hospital of PLA, Beijing.

Serum antibody to Borrelia burgdorferi was measured in 33 patients with sarcoidosis who were confirmed clinically and pathologically. The results showed that 81.8% of the patients were positive. In addition, a strain of Borrelia burgdorferi was isolated from a patient's blood. Fourteen patients received ceftriaxone 2 g per day and/or penicillin 12 million per day and a patient received lincomycin 1.2 g per day. The antibody titer of the patients turned to normal level, their SACE turned to normal range, and chest X-ray findings were markedly improved in 3 cases after the treatment. According to the facts mentioned above, we consider that Borrelia burgdorferi may be the causal agent of sarcoidosis and sarcoidosis might be a special type of Lyme disease.

PMID: 1582344 [PubMed - indexed for MEDLINE]

[ 22. January 2008, 04:34 PM: Message edited by: lymebytes ]

--------------------
www.truthaboutlymedisease.com

Posts: 2003 | From endemic area | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 10 posted            Edit/Delete Post   Reply With Quote 
bytes,

yes, i've known of sarc since i was dx correctly with lyme disease.

also, some of our members have been dx with it also...

if you go to www.marshallprotocol.com; marshall has a SARCOIDOSIS site! that was the 1st lyme site i was on prior to this site.


i know of 2 people in my county alone who have SARC! a former co-worker and someone from my fibro/cfs support group!

my co-worker is in really sad shape; has lost at least 70% of her lung capacity for breathing!


also interesting there are only 3 spirochete diseases:

lyme, sarcoidosis, and the UGLY step-sibling ... sylphlis!!!

IP: Logged | Report this post to a Moderator
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136

Icon 1 posted      Profile for CaliforniaLyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sarcoidosis has been associated with LYme disease & TBDs.

A dear, wonderful woman in our local group has it. It is like diabetes- you can have it mildly or so it's not a huge deal or it can kill you.

I personally think it may be related to bartonella but that is pure speculation-

--------------------
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 | Report this post to a Moderator
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830

Icon 1 posted      Profile for lymebytes   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
This is new to me - geez and I have studied this for 2 years. Sarcoidosis is a spirochete disease? I had no idea, well no wonder they herx. Their treatments are milder and they avoid herxing, saying the build up of toxins is NOT good. They will pulse 25mg of mino 3 days a week until tolerable. Why are we killing ourselves on high doses and herxing, if it isn't necessary?

Cal - You aren't being far fetched about it being Bartonella - look at the link in my first post "they are indistinguishable".

How do they diagnose it?

--------------------
www.truthaboutlymedisease.com

Posts: 2003 | From endemic area | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
map1131
Frequent Contributor (5K+ posts)
Member # 2022

Icon 1 posted      Profile for map1131     Send New Private Message       Edit/Delete Post   Reply With Quote 
lymebytes, I guess you don't know that Lucy (writer of article) is our Tincup that pops in here sometimes when she is bored and isn't off writing or politicing for lyme & company awareness.

Tincup is one busy woman.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

Posts: 6478 | From Louisville, Ky | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
dguy
LymeNet Contributor
Member # 8979

Icon 1 posted      Profile for dguy     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by lymebytes:
This is new to me - geez and I have studied this for 2 years. Sarcoidosis is a spirochete disease? I had no idea, well no wonder they herx. Their treatments are milder and they avoid herxing, saying the build up of toxins is NOT good. They will pulse 25mg of mino 3 days a week until tolerable. Why are we killing ourselves on high doses and herxing, if it isn't necessary?

I've been wondering the same thing. I'm pulsing low dose abx and getting improvement.

Sarc, lyme, syphilis... similar bacteria, similar symptoms, so it seems likely to me that the successful treatment will be similar.

Posts: 727 | From USA | Registered: Mar 2006  |  IP: Logged | Report this post to a Moderator
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338

Icon 1 posted      Profile for Carol in PA     Send New Private Message       Edit/Delete Post   Reply With Quote 
I think if you do a LymeNet search for Sarcoid or Sarcoidosis, that you'll find many discussions.

From what I've read, some researchers think that Sarcoid may be caused by the Lyme bacteria.

When the Marshall Protocol was first discussed here, I was very interested that it was using a blood pressure medication, Benicar, to reduce inflammation.

That led me to look farther into things that reduce inflammation, and led me to proteolytic enzymes.
I've been taking Wobenzym for a couple years now.
Some LLMD's advise their patients to take it to help the antibiotics work better.

Carol

Posts: 6947 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


Icon 5 posted            Edit/Delete Post   Reply With Quote 
bytes,

would you edit subject line and add SARCOIDOSIS to your post? it would grab our sarc patients here, and they would respond to it gladly!

to edit, click paper/pencil icon to right of your nickname which opens BOTH subject line an body text. click edit send when done.
thanks! bg [Wink]

IP: Logged | Report this post to a Moderator
DakotasMom01
LymeNet Contributor
Member # 14141

Icon 1 posted      Profile for DakotasMom01     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks for posting this!!

I wondered if there was a connection bet sarc & tick infections.

I got dx'd with it abt 4 yrs ago.First bite 30 yrs, undx'd. All they told me was it was scar tissue/calcifications and they only treatment was prednasone & inhalers. Thankfully I said No to the steriods.

I have suspected my hubby also has tbi's.{The dr said his only w. blot, a few weeks ago was neg. He didn't get a copy of it.} He was dx'd with sarc abt 12 yrs ago. He was told it was "only calcifications". He refused the steriods too.

He has been bitten by many different types of ticks over the years...But not a deer tick.As we know they are the only ones that have tbi's [cussing] .

Both of us had lung biopsies. But Nothing was ever said abt bacteria or abx for treatment.Just goes to show what kind of ducks/pulmonary sp we have in this county!

I have been wondering abt Bart, for me. Cause after 3 mons on doxy for my bite in "06, I have been getting reoccurring rashes in several places I never had before.The duck keeps telling me its fungal, but the med dosen't cure it.

The past few mons have brought on alot of vision and neuro issues for me too. Yes, all in my head now... [Wink]

Thanks again for the info.

--------------------
Take Care,
DakotasMom01

Posts: 371 | From NJ | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512

Icon 1 posted      Profile for Truthfinder     Send New Private Message       Edit/Delete Post   Reply With Quote 
I don't remember reading that sarc was a spirochetal disease, either.....

Isn't sarcoidosis considered an autoimmune disease?

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�.

Posts: 2966 | From Colorado | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136

Icon 1 posted      Profile for CaliforniaLyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sarcoid is not of clear etiology but has been associated with Lyme. I would not call it a spirochetal disease myself although it has been associated with one. It is a granulytic disease.
If you have it in your lungs that is the worst- you get these deposits of granultyic build-up in your body and if they are in your lungs or important places you are screwed.

--------------------
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 | Report this post to a Moderator
duramater
LymeNet Contributor
Member # 6480

Icon 1 posted      Profile for duramater     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by lymebytes:

I came across a disease I have never heard of called sarcoidosis. This disease is exactly like LD and they even "herx" on antibiotics. There is also a "neuro" form of this disease.

I feel that your characterization of Sarcoidosis being "exactly like LD" is incorrect. In its typical form, sarcoidosis affects the lungs forming granulomas. It is typically treated with steroids with typical resolution of symptoms after such treatment.

It doesn't usually attack the joints, it isn't usually treated with antibiotics, it doesn't usually form an EM rash, it does usually affect the lungs, it does usually respond positively to oral steroids...

In short, the usual form of sarcoidosis doesn't look or act much like the usual form of LD. On the "outer" edges of both diseases there is some overlap in symptoms and treatment (the odd Marshall being the primary example of the latter), but these two diseases are not exactly the same.

Posts: 689 | From western MA (we say buttER and pizzA) | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130

Icon 1 posted      Profile for lymie tony z     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yep Durameter is right lymebytes...

Yur comparison of lyme and sarcoidosis bytes!

zman

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830

Icon 1 posted      Profile for lymebytes   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Lymie tony and Duramater - correct it "usually" starts in the lungs - read my first post again and read Karen's story from CNN READ the links before commenting - it is like saying Lyme starts with a bulls eye rash - not everyone starts that way! Read the links - it is indistinguishable from Bart under a microscope! Don't shoot the messenger!

More proof found today:
Borrelia burgdorferi may be the causal agent of sarcoidosis
Hua B, Li QD, Wang FM.

Naval General Hospital of PLA, Beijing.

Serum antibody to Borrelia burgdorferi was measured in 33 patients with sarcoidosis who were confirmed clinically and pathologically. The results showed that 81.8% of the patients were positive. In addition, a strain of Borrelia burgdorferi was isolated from a patient's blood. Fourteen patients received ceftriaxone 2 g per day and/or penicillin 12 million per day and a patient received lincomycin 1.2 g per day. The antibody titer of the patients turned to normal level, their SACE turned to normal range, and chest X-ray findings were markedly improved in 3 cases after the treatment. According to the facts mentioned above, we consider that Borrelia burgdorferi may be the causal agent of sarcoidosis and sarcoidosis might be a special type of Lyme disease.

PMID: 1582344 [PubMed - indexed for MEDLINE]

--------------------
www.truthaboutlymedisease.com

Posts: 2003 | From endemic area | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
CatCCC
Member
Member # 14262

Icon 1 posted      Profile for CatCCC     Send New Private Message       Edit/Delete Post   Reply With Quote 
This topic caught my eye. I confess, I didn't read the links, because I am already quite familiar with sarcoidosis-- it was a disease I spent a significant amount of time investigating when three nodules were found on my left lung a year ago.

The nodules (all just under the "cancer warning" size) are non-calcified and have no apparent cause. They appeared within a space of three months (between CTs).

My oncologist cannot biopsy them because my left lung collapsed twice when I was 16, and the connective tissue in both my lungs remains weak.

I don't think my nodules are from sarcoidosis, because I believe granulomas are generally calcified. However, I am positive for Lyme and Bart. I don't know when I picked up the Bart, but it certainly could have been around the same time those nodules appeared.

Does anyone else around here have multiple lung nodules (I'm a non-smoker under 25, for the record)-- I didn't know there was even a slight chance something like this could be related to a TBD, but if I am not the only one with them, maybe it is?

Interesting subject, glad you brought it up, and I hope I'm not straying too far from the topic.

Posts: 54 | From Virginia | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

Icon 1 posted      Profile for TerryK     Send New Private Message       Edit/Delete Post   Reply With Quote 
My mom has sarcoidosis. They recently decided it was atypical sarcoidosis. I'm sure it is a TBI. Studies done have shown that sarcoidosis is associated with lyme but there have been other, later studies that refute that.

I was digging around in e-medicine a couple of years ago and found an article that showed bartonella as a differential diagnosis for sarc. Bart can cause lumps from what I've read. I've recently been getting more lumps on my legs since I started treatment. My LLMD said he expects more changes in lumps as we treat bart. I'm convinced that my mom's atypical sarc is bart or lyme or both.

Myself, my mom and my siblings are all sick with similar symptoms. Whatever we have is probably what is causing the lumps. I have a postitive IgeneX IgG and IgM WB and the long bart streaks...

Terry

Posts: 6286 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
B R H
LymeNet Contributor
Member # 12159

Icon 1 posted      Profile for B R H     Send New Private Message       Edit/Delete Post   Reply With Quote 
It really helps to stop focusing on a specific disease diagnosis or a specific pathogen. One pathogen does not equal one disease! Medical diagnosis for most chronic illness is a crapshoot. The reason modern medicine has failed to cure chronic illness is because it can't let go of these antiquated concepts.

Our bodies are a "DNA soup" that is successively infected with many "species" of pathogens over time. The exact mix & mutations you aquire determine your particular symptoms. Borrelia just happens to be a particularly nasty bug with tremendous potential to add to the stew.

If you think about chronic illness from this perspective, things make so much more sense. Don't believe for a minute that doctors are taking in the "big picture" - the flood of research & modern tools & specialties has made this nearly an impossible task.

Posts: 246 | From Grass Valley, CA | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
Itsy_bitsyone
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
Sarc was my first misdiagnosis because I have pulminary fibrosis from varicella pnemonia.

Sarc causes granulomas...granulomas are lymphcytes formed to kill something, that become little cysts, the encapsulate a bacteria of some sort and then turn fibrotic.

I am not aware that BB gets encapsulated in granulomas when being fought by the immune system. I would be more likely to believe a parasite causes sarc. Like histoplasmosis or toxoplasmosis, you can end up with pulminary fibrosis.

However, it does/may cause arthritis and eye problems and fatigue and sometimes effects the whole body and neuro system like lyme, even though pulminary fibrosis is the hallmark symptom. I suppose some people DO have the immune system go wonky and cause it all on its own. However, I know someone who did 6 months of pred and has been in remission ever since with no flares, no relapse. So, I guess sarc is just sarc sometimes!

IP: Logged | Report this post to a Moderator
sunnymalibu
LymeNet Contributor
Member # 9586

Icon 1 posted      Profile for sunnymalibu   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I was diagnosed with sarcoidosis in 1992 from a Kveim test, which is similar to a TB test. I had a positive reaction and it was biopsied.

Two doctors at Mt. Sinai Hospital in NY argued over the results. One said the cells were sarcoid and the other said they were too large to be sarcoid. They agreed to call it sarcoid and that has been my diagnosis.

I have had major eye problems, erythema nodosum (bumps on legs) terrible fatigue, FM/CFS, positive Lyme test thru Igenex.

I have been treated with steroids, methotrexate, antibiotics, cyclosporine, plaquenil, rocephin, bicillin, doxy, azith, (just to name a few).

I have small spots on my lungs (too small to biopsy) and many other manifestations. I have also been exposed to a lot of mold.

I think it could be bart. and lyme. Doxycycline and cipro seem to help me a lot. But I'm still unsure.

--------------------
sunnymalibu

Posts: 192 | From california | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
robi
Frequent Contributor (1K+ posts)
Member # 5547

Icon 1 posted      Profile for robi     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sarc was my first DX. I never believed them because I had soooooooooooooo many Lyme symptoms. I had been bitten by a tick a few months earlier. Was very healthy pre-tick bite and so damn sick after. They gave me a sarc dx me from a lymphnode biopsy that had a granuloma.

Later, I found an LLMD. Found I hard bart and began treatment. In my book, Lyme is related to sarc if not the true cause.

[ 25. January 2008, 07:12 AM: Message edited by: 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 | Report this post to a Moderator
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130

Icon 1 posted      Profile for lymie tony z     Send New Private Message       Edit/Delete Post   Reply With Quote 
Geez,
I wrote this earlier and thought it was brilliant but I guess the computers servers were too busy to serve it up...


We all know that lyme has spirochetes and these spirochetes can mutate into a cyst.

If these little nodes that are on lungs have been biopsied and they find spirochetes inside then sarc is caused by lyme.

However, you say lyme is or is the cause of sarcoidosis.

But Bartonella is not "LYME DISEASE" ok!

Bartonella is bartonella all by itself or as a coinfection that rides in with the rest of the coinfections when the vector takes it's blood meal. RIGHT!

Sooooooo

So let's try to keep these things somewhat straight.

It would be wrong for anyone to say that sarc is caused by lyme.

Now if the research biopsied these nodules and found spirochetes comming out of them then YES...you could say that sarc was lyme disease.

Were these biopsied and found to be pustules,fibrous or solid? Yes?

Then by that definition the good doctor would probably be wrong...

Besides....really....who cares what causes sarco?

The TBD's May just have the cause in the fruit salad of coinfections that do cause sarc....

pneumonia cocci or whatever is in there somewhere right?

That we know goes for the lungs....and is a coinfection of TBD's right!

NOT LYME...!...It could be said I guess that borrelia burgdorferi spirochete is a coinfection of TBD's or TBI's....It does'nt HAVE to be the MAIN MAMMA JAMMA!

Babesia may even be the main disease and lyme rides along with IT!

These are combinations of diseases sequestered in the bellies of blood feasting vectors....

thus the word co-infections.

Do ya see now bytes??

zman

--------------------
I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman

Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
robi
Frequent Contributor (1K+ posts)
Member # 5547

Icon 1 posted      Profile for robi     Send New Private Message       Edit/Delete Post   Reply With Quote 
Perhaps barttonella does not cause such serious manifstions in the absence of borrelia, babesia and what ever else is trasnmitted in the bite.

It MAY (I am just speculating) be that when the immune system is trying to contain so many infections the granuloma develops.

If bart was the ONLY infection you were dealing with, then perhaps the immune system would better be able to contain it and kill it off.

So, it only becomes a problem if lyme, etc are also in your body. So while borrelia may not be the direct cause, it may be a factor that needs to be present for this particular manifestation to occur.

Since our bodies are so complex, I don't think we can say there is one cause for one disease. The overall condition of the body and immune system are of prime impotance in the manifestation of any disease. TERRIAN IS IMPORTANT.

Did that make sense?

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 | Report this post to a Moderator
Munch
LymeNet Contributor
Member # 11323

Icon 1 posted      Profile for Munch   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
In 2001, I was hospitalized for "sarcoidosis" for 3 weeks in 3 different hospitals in neuro intensive care.

Hospital #1 thought it was TB. Transferred me by flashing light ambulance to Hospital #2. They said it was sarcoid after doing a bronchoscopy and removing said suspicious "TB-like" things from my lungs.

By this time I had advanced to acute kidney and liver failure, encephalopathy, facial seizures and numbness, fever, night sweats, severe insomnia, problems with clotting or a high bleeding time, visual and auditory (musical) hallucinations, etc.

Hospital #3 said it was epilepsy not sarcoid.

The entire time I had an untreated tick bite on my leg with a small softball sized EM rash.

One doctor out of 25 "geniuses" with multiple medical degrees documented in my chart...

"mental status changes after insect bite" and "run an ELISA for borrelia" "If positive run a Western Blot".

Then orders for prednisone for the Sarcoid and Doxy for the Borrelia.

Through the haze I remember the bite on my leg and making every doctor look at it. They all decided it was a "spider" bite and of no importance because there is no Lyme in IL.

A person does not go on a camping trip and come back a babbling idiot who walks into walls and falls down like a drunkard.

Posts: 192 | From Dwight, IL USA | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
AnnaInga
Member
Member # 19162

Icon 1 posted      Profile for AnnaInga     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had a physician diagnosed case of lyme 15 years ago, with an EM rash with punctate center and rising titer. I was undertreated with 20 days of amox. Titer stopped climbing, now I am considered seronegative except with Igenex.

Now I am being evaluated for Sarc. I have more -opathies than I will mention here, and am very, very sick. If I get diagnosed with this Sarc, it will also be neurosarc. I have not been well for 15 years, and yes, it is in my joints....it is everywhere, absolutely everywhere.

I live in a Great Lakes state where Lyme treatment is very difficult to get.

I don't know what will happen to me.

Posts: 11 | From Great Lakes | Registered: Feb 2009  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

Icon 1 posted      Profile for TerryK     Send New Private Message       Edit/Delete Post   Reply With Quote 
Anna,
I'm so sorry that you are sick and have been sick for so long.

If you absolutely cannot get to a lyme literate doctor, can you at least get a doctor there who will test you for bartonella? Even a negative test doesn't mean that you don't have it because new strains being discovered all the time and only a few are tested for. At least if you tested positive for it you could get some treatment. Probably wouldn't be adequate treatment but it would be a start.

At the very least, you could consider the many herbal programs for lyme and co-infections.

Please consider contacting your local lyme group and asking them if they know of any resources that can help you.

Terry

Posts: 6286 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hubby has been down this path as well. Multiple pulmonary nodules and bilateral hilar adenopathy found by x-ray in 2003. Follow-up was chest CT and PET scan of lungs. Then bronchoscopy. Diagnosis -- inflammation of unknown etiology. Histoplasmosis ruled out. Sarcoid ruled out since ACE test was normal.

We refused sugical lung biopsy so the pulmonologist did follow-up chest CT's every 6 months for 3 years to rule out cancer. Some nodules increased in size and others shrank in between CT's. Lympatic massage did seem to reduce the size of some nodules. Also did some glutathione by nebulizer around the same time.

In 2008 re-evaluated by a New York City hospital (Lennox Hill). Admitting neurologist tried to talk pulmonologist into a neuro sarcoidosis diagnosis -- pulmonologist did not agree. ACE test negative for 3rd or 4th time. Lung PET scan still shows multiple pulmonary nodules (both lungs)and bilateral hilar adenopathy.

In January 2009 (now annual chest CT) some nodules may be calcified -- report somewhat uncertain about this. First mention of fibrotic tissue also.

Pretty sure there is a PubMed article mentioning Bart and pulmonary nodules.

Hubby and I have always thought this was a Bart symptom rather than Lyme or Babesia.

Bea Seibert

Note: Editing to add that hubby has never smoked and until tickborne illness was a jogger.

He has no obvious symptoms from his pulmonary nodules. However, we have considered a surgical biopsy if Clongen or Fry can ever identify the mystery bug by PCR.

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
1: Clin Infect Dis. 1995 Jun;20(6):1505-11.

Bartonella henselae: etiology of pulmonary nodules in a patient with depressed cell-mediated immunity.

Caniza MA, Granger DL, Wilson KH, Washington MK, Kordick DL, Frush DP, Blitchington RB.
Department of Pediatrics, Duke University Medical Center, Durham, North Carolina, USA.

We describe an immunocompromised renal transplantation patient with opportunistic lung infection due to Bartonella henselae (formerly Rochalimaea henselae) and provide evidence suggesting transmission from a pet cat.

Computed tomographic scans of the chest and lung biopsies provided material for diagnosis. The etiology was established by polymerase chain reaction and sequencing of a 16S ribosomal DNA segment from infected lung tissue. Histopathologic and serological evidence supported the molecular data.

B. henselae was isolated from the blood of eight of the patient's many cats.

The patient responded to prolonged therapy with doxycycline, and relapse did not occur during a 1-year follow-up.

B. henselae joins a long list of pathogens that can cause lung infections in association with cell-mediated immunodeficiency states. Molecular methods are useful in diagnosis of this infection in light of the bacterium's fastidious growth characteristics.

If an immunocompromised patient has lung nodules and a history of exposure to cats, B. henselae should be sought in biopsy specimens.

PMID: 7548500 [PubMed - indexed for MEDLINE]

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Anna .. There's a great LLMD in Missouri. Contact me if interested.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96222 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
theres a new llmd in PA if that is closer-he seems really good

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Bugg
Frequent Contributor (1K+ posts)
Member # 8095

Icon 1 posted      Profile for Bugg     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hey Lymebytes--

As I'm sure you've seen on this board, sarcoidosis has been brought up in conjunction with the great "vitamin D debate." Often those with sarcoidosis or other granulomatous diseases cannot properly metabolize calcium and should, therefore, avoid supplementation with Vitamin D. Their 1,25 (OH)2D is often upregulated. Although I'm not correctly stating his theory, Dr. Marshall thinks, perhaps, lyme disease is of the same etiology and so lyme patients should avoid the use of Vitamin D (again just roughly stating this)....

This e-mail chain, however, makes me wonder if it's really the coinfection of bartonella or "cat scratch fever" that causes the upregulated production of 1, 25 (OH)2D...(instead of the borrelia burgdorferi)...

I could be totally wrong but I thought it was usually granulomatous diseases that pose this disregulation...

Anyway, for what it's worth, here's an interesting abstract on this issue:

Hypercalcemia due to endogenous overproduction of active vitamin D in identical twins with cat-scratch disease.Bosch X.

Internal Medicine Unit, Hospital Casa Maternitat, Corporaci� Sanit�ria Clinic, Barcelona, Spain.

CONTEXT: The extrarenal synthesis of active vitamin D sterols has a central causative role in the hypercalcemia associated with various granulomatous diseases. OBJECTIVE: To study the calcium metabolism in patients with cat-scratch disease who have hypercalcemia. DESIGN: Case report. SETTING: University hospital in Barcelona, Spain. PATIENTS: Two identical twins who developed asymptomatic hypercalcemia during the acute phase of cat-scratch disease. MAIN OUTCOME MEASURES: Serial measures of calcium homeostasis and metabolism over a 2-month period.

RESULTS: On admission and 6 and 7 days later, both patients were found to have increased levels of serum and urinary calcium, serum phosphate, and serum 1,25-dihydroxyvitamin D [1,25(OH)2D], whereas they had normal values of serum 25-hydroxyvitamin D and urinary cyclic adenosine monophosphate and decreased serum concentrations of intact parathyroid hormone. Sixteen and 20 days after admission, these abnormalities had resolved without treatment. A direct correlation was observed between the serum 1,25(OH)2D levels and both the serum and 24-hour urinary calcium concentrations. Also, the concentrations of calcium and 1,25(OH)2D paralleled the clinical activity of the infectious disease over the period these parameters were measured.

CONCLUSIONS: Our cases provide evidence that cat-scratch disease can produce hypercalcemia through the unregulated production of the metabolite 1,25(OH)2D. Cat-scratch disease should be added to the list of granuloma-forming diseases that are responsible for 1,25(OH)2D-mediated hypercalcemia.

Posts: 1155 | From Southeast | Registered: Oct 2005  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


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, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.