Lymes/Leaks/C/T disease-a connection?

[mot]

I don't know about the other leakers here but have you ever been curious at the root cause of your spontaneous leak, perhaps this mention of "connective tissue disorder(s) disorder that we see in some of the medical literature.

I am wondering how many of us were diagnosed with markers for a c/t disorder and how many have had Lymes disease? Could there be a possible connection because a number of us here that have had tick borne diseases like Lymes.

I apologize in advance if this is another wild goose chase!:)

M

[xtine]

before i knew what was wrong with me, i saw an infectious disease specialist because i thought i had lyme disease. when i googled my symptoms i was lead to several lists which matched what i was feeling. i spent 4 months on antibiotics with no real improvement... however i was convinced i had lyme and so was my dr.

i almost think it's part of our psyche and human nature to suspect some sort of stealth bacteria harvesting in our bodies attacking at their own whim. i felt so toxic and infected and just plain ill 24/7.

after reading about CSF leaks and perilymph fistulas i realized that was my issue. i had some obvious trauma which i overlooked and never considered to have a leak in my ear. the only noticeable improvement i made was doing the rest and following the no lifting, bending, straining protocol. the antibiotics didn't give me any relief, although i was convinced they did.

i was surprised how similar both lyme and csf leaks can be. i have developed joint pains from low CSF, all the neuro issues, ear issues etc.. i have never had a known tick bite. i personally believe a lot of lymies have CSF leaks, vestibular diseases or injuries. in fact, i know of a few people with lyme who i met during this time that i convinced have a csf leak. one lady developed all her symptoms after having her baby during a c-section... although she tested very positive for lyme and rocky mountain spotted fever. she lived in the city and had never had a tick bite to her knowledge. she's remained on meds for over 2 years, doing high doses of antibiotics by injection and has the made the same sort of progress as me not being on meds. her only help was getting an anti-depressant to help her.

IMO- one has to be very careful with lyme- it seems to be a catch-all for any problem that goes undiagnosed. the tests are not reliable, the constant cycle of improving and then herxing are unreliable and in some cases it seems that the treatment does more harm then good. seems most people develop digestive issues later on during their infection, gluten intolerances, GI issues etc.. i'm convinced this is from high doses of antibiotics for an extended amount of time.

another thing i've learned is that antibiotics do help in the healing process. they reduce inflammation around a wound by killing off mild infections. also some cocktails numb the vestibular system by killing off the vestibular nerve and thus improving vestibular symptoms.

i'm not denying that lyme does not exist and i do believe that it does go un-noticed by most doctors however i do question chronic lyme, neuro lyme and those who have 'something' and turn to lyme as something to cling to which might explain their symptoms.

the lymies i still keep in touch with have taken high doses of antibioitcs for years... those who never seem to make a recovery i think should re-evaluate their diagnosis.

i'd love to hear other's opinions as i lived this for several months... however i hope i don't offend anyone by my comments...

regards,
christine

[mot]

Hi christine,

Very interesting post. I thought that just maybe Lymes might not be active but was responsible for the connective tissue damage, but it would be really difficult to find proof of this. Thanks again!

Best,
M

[xtine]

yes. this theory could be possible i guess. it's just hard to pinpoint.

for me, i wonder about the idea of a connective tissue issue. for years now i notice i hear a scraping sound in my knees when i go from sitting to standing... i wonder if this is tissue ripping and that there is something wrong with my collagen production.

for me, i know that before i knew i was leaking CSF all my symptoms were also explained by lyme. sinus congestion- bartonella (a co-infection), headaches (lyme in the brain), various muscle pains (lyme), muscle twitches, hearing loss etc etc.. once i learned about a csf leak it all made much more sense and i was able to find triggers which made me worse..

especially once my leak turned intermittent... all my symptoms improved if i wasn't leaking and worsened if i was.

i don't have fevers, rash or massive joint pains which are the more common symptoms of lyme. i guess if someone does, then they might want to look into it.

do u think that connective tissue damage can be nutritional? with over-farming our soils nutrients are depleted and we're missing various minerals in our foods. copper, iron, zinc and even more obscure ones which might play a role in wound healing.

also with an increase of people going to chiropractors, having car accidents and have more invasive medical procedures might be contributing to leaks.

[vini]

hi all interesting given Laura,s DH http://chppm-www.apgea.army.mil/ento/TickEd.htm initial illness some times you can get many different infections from a single bite ?????

[mot]

yes. this theory could be possible i guess. it's just hard to pinpoint.

for me, i wonder about the idea of a connective tissue issue. for years now i notice i hear a scraping sound in my knees when i go from sitting to standing... i wonder if this is tissue ripping and that there is something wrong with my collagen production.

for me, i know that before i knew i was leaking CSF all my symptoms were also explained by lyme. sinus congestion- bartonella (a co-infection), headaches (lyme in the brain), various muscle pains (lyme), muscle twitches, hearing loss etc etc.. once i learned about a csf leak it all made much more sense and i was able to find triggers which made me worse..

especially once my leak turned intermittent... all my symptoms improved if i wasn't leaking and worsened if i was.

i don't have fevers, rash or massive joint pains which are the more common symptoms of lyme. i guess if someone does, then they might want to look into it.

do u think that connective tissue damage can be nutritional? with over-farming our soils nutrients are depleted and we're missing various minerals in our foods. copper, iron, zinc and even more obscure ones which might play a role in wound healing.

also with an increase of people going to chiropractors, having car accidents and have more invasive medical procedures might be contributing to leaks.

The weak or damaged connective tissue thing seems to be at the root of a lot of our trouble and I don't here any medical people addressing except to say it may be the cause. Fixing leaks on a spontaneous leaker is like roofing a house with cardboard-eventually it is going to leak!
I started having problems after I installed a home gym in my house. My diet has always been pretty good and I did not go to chiropractors so, who knows.

I thought there might be a connection with Lymes because some doctors are prescribing doxycycline for leakers but it is to raise ICP and not for its antibiotic effects. Doxycycline is a common a/b prescribed for Lymes disease. If I start leaking again I think I'll give this a whirl.

Vini-a few of us suspected Lymes and were tested . I lived in a seaside area known for Lymes for many years and had the tests done a few times when I suspected I had been bitten. All of them came back negative. Now there is a controversy about the Lymes tests being inaccurate. The CDC is admitting that Lymes has been underreported (http://www.canlyme.com/underreport6to12times.html)from 6-12 times. Lots of false negative results. As christine says lots of similarities in symptomology.
M

[Robbysmom5]

I agree - I think there may be an extremely interesting connection. If you were diagnosed with Lyme disease prior to your leak, I think it is definitely worth exploring "chronic" lyme disease treatments. The following link had some good overview info and links to current research showing how evasive the Borrelia burgdorferi bacteria can be.

http://www.columbia-lyme.org/patients/ld_lyme_disease.html

[mot]

I agree - I think there may be an extremely interesting connection. If you were diagnosed with Lyme disease prior to your leak, I think it is definitely worth exploring "chronic" lyme disease treatments. The following link had some good overview info and links to current research showing how evasive the Borrelia burgdorferi bacteria can be.

http://www.columbia-lyme.org/patients/ld_lyme_disease.html
Thanks for the great link. I wonder if anyone has come across any mention of alteration of connective tissue post infection of Lymes?

M

[xtine]

best to post on lymenet.org... you can even find a lyme literate doctor in your area. the best testing is to be done thru a western blot and thru igenex labs- most LLMDs follow this procedure.

even still- it's a clinical diagnosis so if you find a dr. who is knowledgeable you can get treated.

[vini]

hi all from what I can glean these bugs are not virus or Bactria but an in between bug that replicate in cells then burst the infected cell thus weakening internal structures so this is an interesting line of inquiry http://emedicine.medscape.com/article/968385-overview

as always best wishes

[punctured]

Now I don't understand my own care: 1) I'm in super prime spot for Lyme (but test was negative). I was further diagnosed with 2) spinal leak, 3) NDPH, and 4) chronic sinusitis.

And doxy is a #1 drug for ALL of them: 1), 2), 3) and 4)?

Over the years, I must have been given every possible kind of drug that some neurologist ever observed to improve headaches. BUT antibiotics.

Because they're too dangerous? Then what about the blood patches and possible surgeries? This is really confusing!

P.

[mot]

All roads lead to doxy:)

M

[xtine]

Now I don't understand my own care: 1) I'm in super prime spot for Lyme (but test was negative). I was further diagnosed with 2) spinal leak, 3) NDPH, and 4) chronic sinusitis.

And doxy is a #1 drug for ALL of them: 1), 2), 3) and 4)?

Over the years, I must have been given every possible kind of drug that some neurologist ever observed to improve headaches. BUT antibiotics.

Because they're too dangerous? Then what about the blood patches and possible surgeries? This is really confusing!

P.

if you suspect lyme it might be worth seeing an LLMD. they are more liberal about prescribing abx vs other doctors who are more cautious. as far as i can tell most doctors stick by what is advised or cdc recommendations but there are several who are more familiar with lyme and co-infections that stand up for their patients a bit more.

one thing i know my doctor did was test me for the co-infections because those have a better chance of testing positive with. bartonella is common with sinusitis.

certainly check out the lymenet message board as there are quite a few well educated people on there who are big believers in lyme...

but i do warn you that it's very easy to get caught up in the hype.

[mot]

My wife reminded me last night that while I was on a course of Z pack I felt way better until I stopped taking it. In fact (this was years ago when I first became symptomatic) I actually was able to climb a small mountain out here with friends!

M

[mot]

Lyme talk on NPR :
http://kjzz.org/programs/dianerehm
M

[sis2831]

before i knew what was wrong with me, i saw an infectious disease specialist because i thought i had lyme disease. when i googled my symptoms i was lead to several lists which matched what i was feeling. i spent 4 months on antibiotics with no real improvement... however i was convinced i had lyme and so was my dr.

i almost think it's part of our psyche and human nature to suspect some sort of stealth bacteria harvesting in our bodies attacking at their own whim. i felt so toxic and infected and just plain ill 24/7.

after reading about CSF leaks and perilymph fistulas i realized that was my issue. i had some obvious trauma which i overlooked and never considered to have a leak in my ear. the only noticeable improvement i made was doing the rest and following the no lifting, bending, straining protocol. the antibiotics didn't give me any relief, although i was convinced they did.

i was surprised how similar both lyme and csf leaks can be. i have developed joint pains from low CSF, all the neuro issues, ear issues etc.. i have never had a known tick bite. i personally believe a lot of lymies have CSF leaks, vestibular diseases or injuries. in fact, i know of a few people with lyme who i met during this time that i convinced have a csf leak. one lady developed all her symptoms after having her baby during a c-section... although she tested very positive for lyme and rocky mountain spotted fever. she lived in the city and had never had a tick bite to her knowledge. she's remained on meds for over 2 years, doing high doses of antibiotics by injection and has the made the same sort of progress as me not being on meds. her only help was getting an anti-depressant to help her.

IMO- one has to be very careful with lyme- it seems to be a catch-all for any problem that goes undiagnosed. the tests are not reliable, the constant cycle of improving and then herxing are unreliable and in some cases it seems that the treatment does more harm then good. seems most people develop digestive issues later on during their infection, gluten intolerances, GI issues etc.. i'm convinced this is from high doses of antibiotics for an extended amount of time.

another thing i've learned is that antibiotics do help in the healing process. they reduce inflammation around a wound by killing off mild infections. also some cocktails numb the vestibular system by killing off the vestibular nerve and thus improving vestibular symptoms.

i'm not denying that lyme does not exist and i do believe that it does go un-noticed by most doctors however i do question chronic lyme, neuro lyme and those who have 'something' and turn to lyme as something to cling to which might explain their symptoms.

the lymies i still keep in touch with have taken high doses of antibioitcs for years... those who never seem to make a recovery i think should re-evaluate their diagnosis.

i'd love to hear other's opinions as i lived this for several months... however i hope i don't offend anyone by my comments...

regards,
christine

Hi!
I was really drawn to this question.....as my husband had been ill after a spinal steroidal injection in 3/07. Six months later he had lost 30 pounds! Was hospiralized, and all tests done, not lyme, and they did not do blood patch, as anesthesia said he could NOT have leak after that long...!!! Anyway, now in Dec 07, he is passing out, and still having headache, severe fatigue, etc....and i was searching the internet for answers while he was in hospital that night. Lyme disease came up, and just about EVERY sympthom matched....so i asked if they could test him for it, as it is a simple, non invasive test. They did so, his regular doc was not there at hospital. When he was discharged, and later got lyme test outpatient, we went to doc appt, and doc was so pissed off that we had that test done, saying he would kick my *** if it comes back positive!!!>>????/I told him not to worry it came back negative!! But i can understand HOW you came to that conclusion about Lyme! I was so pissed at doc for saying that....I told him we can just add it to the LIST of TEsTS HE ORDERED, that came back negative. But when you are sick for over 7 months you get desperate looking for answers. And if they were more proactive, maybe i would not have felt the need to SOLVE this mystery! Again, I do understand WHY you would think you have it, as i did with my husband! BUT HE DOES HUNT and it seemed that he would be likely to have been bit....as he has come home with ticks on him from being in the woods. We would check him out thoroughly when he would come home, but that does not mean we could not have missed ONE! Unfortunately, it is over two years later, and my husband is still sick, with a leak. And hopefully, we will be getting answers soon. He passes out, making things even scarier for us. Hope I helped in at least confirming your reason for suspicion of Lyme!! Michele

[sis2831]

Now I don't understand my own care: 1) I'm in super prime spot for Lyme (but test was negative). I was further diagnosed with 2) spinal leak, 3) NDPH, and 4) chronic sinusitis.

And doxy is a #1 drug for ALL of them: 1), 2), 3) and 4)?

Over the years, I must have been given every possible kind of drug that some neurologist ever observed to improve headaches. BUT antibiotics.

Because they're too dangerous? Then what about the blood patches and possible surgeries? This is really confusing!

P.

Hey,
see the answer to the lyme disease i posted below! We thought my husband had that, too!! ANd the doc was pissed that we asked to be tested!!! My husband used to hunt all the time, pre leak!! And I do not understand the resistance for docs to try the doxy, just in case!!! My husband used to and sometimes still does, but not as bad, but get chills so bad he would shiver, teeth chatter....and it was NOT cold!! I gave him some of my bactrim, and he felt better within a few days, as far as the chilling and feeling just ill. When i told the doc, and this was before the lyme disease issue came up....he did give him some antibiotic. Bactrim. But when he knew we got lyme test...his exact words to me, i will kick your *** if it comes out positive....i do not know why!! Anyway, i told him NOT to worry i picked up results already, and they were negative! I agree totally with you....why the hesitance to give an antibiotic, versus more invasive type things!!<|Michele

[vini]

hi I know I,m off on one of my tangents, that I am apt to do but
if some one were to be infected with lyme,s and have recovered naturally, so that the organism could not survive in the blood , could the organism shelter from the immune system by hiding in the csf and dura matter thus weakening it , given it replicates in cell much like the Herpes simplex virus, which lays dormant in the spine

HSV may persist in a quiescent but persistent form known as latent infection, notably in neural ganglia.[1] During latent infection of a cell, HSV express Latency Associated Transcript (LAT) RNA. LAT is known to regulate the host cell genome and interferes with natural cell death mechanisms. By maintaining the host cells, LAT expression preserves a reservoir of the virus, which allows later recurrences to produce further infections.

A protein found in neurons may bind to herpes virus DNA and regulate latency. Herpes virus DNA contains a gene for a protein called ICP4, which is an important transactivator of genes associated with lytic infection in HSV-1.[21] Elements surrounding the gene for ICP4 bind a protein known as the human neuronal protein Neuronal Restrictive Silencing Factor (NRSF) or human Repressor Element Silencing Transcription Factor (REST). When bound to the viral DNA elements, histone deacytalization occurs atop the ICP4 gene sequence to prevent initiation of transcription from this gene, thereby preventing transcription of other viral genes involved in the lytic cycle.[22][23] Another HSV protein reverses the inhibition of ICP4 protein synthesis. ICP0 dissociates NRSF from the ICP4 gene and thus prevents silencing of the viral DNA.[24]

The virus can be reactivated by other illnesses such as cold and influenza, eczema, emotional and physical stress, exposure to bright sunlight, gastric upset, fatigue or injury, and by menstruation.

I wonder if a biopsy has ever been done on a nerve root cyst with the correct staining to show up lyme

I have no evidence to back this up just mussing on the subject again

[xtine]

i've heard that theory mentioned before vini- lyme docotrs usually treat co-infections along with lyme as well as use cyst blaster antibiotic combos to break up cysts.

lyme can remain in the system dormant for years and years but i'm not sure where it hides...

[vini]

hi I think this hints at a location



"Borrelia burgdorferi, the etiologic agent of Lyme borreliosis, was isolated from the CSF of a patient with elevated serum IgG antibody titers against B burgdorferi and a history of multiple tick bites. The absence of concurrent inflammatory signs of CSF as well as intrathecal antibody production indicates a phase of latent Lyme neuroborreliosis in which no tissue infection or reaction has yet occurred. ...

http://www.geocities.com/HotSprings/Oasis/6455/latent-biblio.html#subclinical

From Coyle et al “Detection of Bb specific antigen in antibody negative CSF in neurologic Lyme disease”

Identified Osp A (a specific Bb antigen) in 43% of those patients who were negative for Bb antibodies by Elisa. CSF frequently normal to conventional tests even in neurologic Lyme disease.

“B. Burgdorferi antigen can be detected in CSF without positive CSF antibody. Since CSF antigen implies intrathecal seeding of the infection the diagnosis of infection by B burgdorferi should not be excluded solely on the basis of normal routine CSF or negative CSF antibody analyses.”

http://www.lymediseaseaction.org.uk/conf2005/owen_fri.htm