Off Lyme topic, Re: Bacteria, Abx, and Herxing

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+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 5/15/2009 7:03 PM (GMT -6)   

This post is not about Lyme. My intent is not to take any attention away from those on here seeking help w/ Lyme, but is a sincere plea for help from those of you on here who know a lot about cells, bacteria, and abx, esp long term.  cry

 

This is regarding my father’s illness, because his doctors have not been able to help him.  They do not know anything (just as w/ Lyme!)

 

First, my Dad is the strongest man I know. Never in his life has he chickened out of anything. And he's always HELPED others, many many others, in many many ways. He has never given into anything in his life.  He took bee stings (always saving people!) all of his life, til 3 stings almost killed him and he can never be stung again.  He used to get cavities filled without novacain because he believed it was bad for you and believed he should withstand the pain.  Now, I cannot even bear his pain and vulnerability. Not this guy!!

 

Anyway, as succinct as possible:  He’s 80.  about a year and a half ago he had a hip replacement.  From that surgery, he got a terrible infection, all the way into the artificial hip.  It was enterobacter cloacae, (EC) which is very resistant to abx.  (it is gram negative, if that means anything to anyone)  They had to go back in and drain and clean out the new hip.  He almost died this was so bad.  Was on a pic for several months and has been on Cipro now for over a year.

 

His infection disease (ID) Dr has told him he will have to be on Cipro for the rest of his life. He cannot ever stop taking it, because there is no way for them to be certain that there is absolutely no EC.  They still check his blood, semi routinely, and so far, they say he is OK.

 

Everyday since his ‘recovery’, he has become ill. I will only list symptoms I think could be pertinent:  He has hot flashes and sweats at nite – feels like he is burning up.  Every afternoon at around the same general time, he gets a hot flushed face and his eyes start burning. And he has a general feeling of malaise.  This goes on the rest of the day.  His fatigue is almost profound.  I cannot bear the thought of him suffering like this.  These may or may not be related: arthritis in knees and pelvis, ringing in one ear, shortness of breath (he smoked until 1982).

 

He felt like he was suffering side effects from the Cipro. But they took him off for almost a month, substituting another abx.  None of his symptoms subsided in the least.  ID Dr has done a lot of lab work on him and tell him he’s fine.  They don’t see evidence of the bacteria in his body and nothing is abnormal. 

 

He really likes his ID and feels he’s done all that he could.  So it is left to us (him and me) to try and figure out what is going on, because I strongly suspect some kind of chronic disease which they have not detected.  I have copied and pasted below a section I found on Cipro:

************************************************************************
 Taking Ciprofloxacin can spur germs to mutate so
  that future bacterial infections become untreatable. During the
  last decades a dramatic increase in bacterial strains multiresistant
  to antibiotics, particularly CIPRO - has been reported.

 This increase has led to the occurrence of incurable
  bacterial infections with a fatal outcome, and a particularly
 serious problem in connection with hospital-acquired infections.

 

Incurable and fatal??  This is why I’m so angry at his doctors!!  And the labs, too -- now that I know they are so fallible and don't read everything they should be!

 

1. I have tried researching herxing:  Is it possible that his EC persists, so the Cipro keeps hitting it, causing a constant herx?  Is there such a thing?

 

2. Or is it more likely that he has a chronic infection, other than the EC, that will not respond to Cipro?

 

3. Is this Candida? I had him do the almost fool proof spit saliva test, and his spit floated correctly.

 

If you believe this is a chronic disease/infection, could anyone help steer me in any direction?  And, for folks like Razzle, who have many diagnoses/illnesses, can you tell me what type of Dr you consulted in order to get the correct type of lab tests run?   Or was it your LLMDs that diagnosed other illnesses, like mycoplasma, etc?

 

Of course, I will ask him to get a lyme test, but at this point, I suspect some other kind of infection (unless it’s a herx), since this started after the major EC infection.  I want to make sure I point him towards a LLMD or the type of Dr that will truly investigate this chronic illness.

 

Any ideas will be sincerely appreciated!

 

Post Edited (LymeUnknown) : 5/15/2009 7:07:32 PM (GMT-6)


Razzle
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Date Joined Aug 2007
Total Posts : 4399
   Posted 5/15/2009 7:46 PM (GMT -6)   
Is Cipro the only medication he is on, or are there others he takes? If so, what are they?
Does he take any nutritional supplements or probiotics? If so, which one(s)?
What time in the afternoon do the flushing face and burning eyes occur?
Has anyone taken his temperature at night when he is experiencing the burning and sweating? If so, does he have a fever?

First impressions:
Could be allergies, autoimmunity, infectious, hormone imbalance, drug side-effects, etc.

Cipro side-effects possibly relevant to this case: tinnitis, flushing, eye pain, sweating, fever, drowsiness, malaise, asthma-like symptoms (bronchospasm, dyspnea).
See http://www.rxlist.com/cipro-drug.htm for complete list
Drug side-effects may not go away even for weeks after stopping the medication; some may be permanent, some may require more time and/or detoxing to go away.

The most helpful doctors I've had are my current Allergist and my current LLND. There was also one homeopathic physician I saw when I was a teenager who was excellent. It is hard to find a doctor willing to look at the whole person instead of just at their own narrow specialty. It is hard to find a doctor who can think outside the box. I managed to do just that with my current Allergist and LLND, thanks to recommendations from close friends.

Where is your Father located? Maybe someone here can recommend a good doctor in the vicinity.

I hope this helps - take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/16/2009 1:48 PM (GMT 0)   
Thank you, Razzle. He lives in Asheville, NC, and according to my mom, it is a 'hub' of holistic and non traditional healers and such. But he is a brilliant phd in mathematics. It would be difficult to impossible to get him to go to some 'quack', as he would say. You probably couldn't get him to go to a chiropractor if he was crippled. (which he is almost)

He does not take any supplements or probiotics. He tossed his vites years ago and will not even take C w/ a cold anymore. Should I steer him towards probiotics? (I will research these). Other meds are typical geriatric stuff: high blood pressure, cholesterol, that type of stuff, I don't know what else. I think he takes 2 different meds for the high blood pressure. I am opposed to all these various meds, and he is too, but if he talks to the Dr about them, Dr insists he must take them.

Oh, he also has Lymphedema, but this is not recent. He's had badly swollen legs and ankles for at least 10 years. They did not even catch this until well after his surgery and he ASKED them to look at them. He got professional help w/ a therapist, who fit him w/ the special stockings, etc.

I sent him that comprehensive list of cipro side effects. Still, the ID maintains it is not the cipro and he must stay on it.
He does not have a fever -- at least the times he has taken his temp.He says he feels as if his body is burning hot to the touch, but that it is not feverish. He IS good about taking him temp, because he is terrified of the EC and would beline to the Dr if he got a fever. The burning eyes and face flushing occur around 2ish in the afternoon. He has tried taking his meds at all different times of the day and there is no difference. He claims to be miserable. ALL of this is of concern, because he has never been a complainer!

So I'm assuming some kind of long term herxing is not a possibility? Then I believe I will start with just getting him to try seeing another Dr -- perhaps a referral from another Dr. I can probably convince him that as much as he likes this ID, he obviously needs another Dr's opinion. I may be able to cause him some concern about autoimmunity or another infection. Allergies, I don't know. He and Mom have supposedly ruled out everything they can think of. But maybe a new Doc would at least look at this possibility.

I trul appreciate the help and advice!
 
Razzle, do you believe that all your issues are related to your Lyme?

Dowa
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Date Joined Sep 2008
Total Posts : 1120
   Posted 5/16/2009 12:27 PM (GMT -6)   
LUnkown: It is possible he is reacting to the materials in the artificial hip. When I came to Tx to detox, the first question they ask is do you have any artificial materials in your body- from hips to dental implants to breasts implants. He believes that we become "autoimmune" from materials that are in the body if the body is rejecting it. His treatment (if it cannot be removed) is to make an anitgen of the material that the hip is made from and he would stop making antibodies to it. Does this make sense? Its seems is all started with the new hip. Just a thought.. D

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/16/2009 10:00 PM (GMT -6)   
YES Dowa, this does make sense! I will keep Razzle's and your posts for reference!

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/17/2009 12:34 AM (GMT -6)   
Cipro doesn't work against anaerobes. This bug is capable of being either anaerobic or aerobic, depending on the oxygen content of where it is colonizing. If this bug lives in the joint instead of on or near the skin, then it has to be an anaerobe. IMHO, he needs a second opinion from a doctor who understands this particular bacteria better.

No, I don't think his symptoms are from a herx. I would expect more variability with a herx.

I suspect the blood pressure meds and/or something else in his diet or environment to be the cause. For example, when I was able to eat, if I ate a large baked potato, that night when trying to sleep I would be guaranteed to have intense burning heat sensations in my feet (even though they felt normal temperature to touch). All other cooking methods of potatoes did not do this to me, just baked potatoes (or other baked potato products, such as potatoes au gratin).

I asked the time of day because of possible correlations with fluctuations in blood sugar or adrenal hormones. But 2pm doesn't fit either of these issues...

Have his kidneys been evaluated? Lymphedema is one symptom that poorly functioning kidneys can cause.

Have any of his doctors run an autoimmune panel on him (ANA, RF, c-ANCA, p-ANCA, APA, etc.)? Vasculitis is a possibility...though his symptoms would be an unusual presentation... John's Hopkins has a pretty good Vasculitis clinic. Maybe taking him to one of the Rheumatologists there would shed some light on some possibilities?

Does he eat a balanced diet? I'd recommend at least encouraging him to eat as many fresh fruits and vegetables as he can. The anti-oxidants may help his body overcome whatever is going on.

As for me, well, no I don't attribute everything I've got going on to Lyme. I know, for instance, that my sulfite sensitivity and gluten sensitivity are both present because of genetic variants that I have. And whatever is up with my gut may or may not be totally due to Lyme, because I had gut problems even before I got Lyme (unless I got Lyme from my parents at/before birth...one LLMD said I had congenital Lyme but he did not explain how he arrived at that conclusion). There may also be other genetic issues with me, but not all of them have been explored...I go back to my Allergy/Immunology doctor next week to discuss some more tests on my strange immune system, for example. I've also had body temperature issues since birth (was in an incubator the first few days after I was born because I couldn't hold my body temperature) that may be due to me having been born about a month too early. I also had some very mild developmental delay that likely has nothing to do with Lyme.

Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.

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