Some of these medications she once could use, then suddenly she went to start new cycles and within 3 hours she was experiencing problems (i.e. extreme fatigue), and or blood counts were dropping to low (dangerous) levels.
She is diagnosed with Lyme and Ehrlichia via ELISA. Western Blot was band 31 and 39 but indetermined. Physician considered it positive inspite of that. Babesia is clinically diagnosed, and Bartonella clinically based on symptoms and response to Mepron and Bactrim/Rifampin.
She was infected in north Italy where the strains are different.
Anyone with experience having problems tolerating a lot of different antibiotics or know why someone would become so sensitive?
[ 10. May 2008, 04:01 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Has she been tested for her ability to detox? There is a genetic test for a marker that shows an inability to properly detox. The people who have this gene generally get worse with treatment until the detox issues is addressed.
Hang in there, keep looking for answers!
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Aniek
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Genova labs offers a test (for about $400) that does a genetic profile of your detoxification. It will give your doctor a list of medications you shouldn't take because your body may not be detoxifying them properly.
A few of the medications you listed are on my list of what I can't take according to the test.
My energy levels increased when I stopped the medications that were causing toxicity and one of my symptoms that started mid-treatment (adominal pain) is almost completely gone.
Unfortunately, I'm not dealing with really bad inflammation that the Plaquenil was controlling.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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METALLlC BLUE
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Thanks for the information. Let's keep this rolling, I'm sure others out there have more suggestions and or suffer the same issues.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I am really super-sensitive to all drugs I have taken. Every time I would take a new antidepressant or antipsychotic drug, I would notice the effects right away. It's supposed to take two weeks to "kick in"...not so with me.
Hasn't just been those kind of drugs either. I've noticed it with birth control, too. I haven't been on too many drugs, thank goodness! I only tried things I felt I really needed. I don't know how I got through all the pain.
I really think it is the Lyme and co-infections that make us sensitive. Just my opinion though. I wish her the best of luck!
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Aniek
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lorenzfam,
You might want to consider the Genova tests. It looks at polymorphisms on the genes and some are related to how quickly you metabolize certain medications.
These tests are now regularly used to determine how much Heparin patients need. It explained to doctors why people needed such widely different doses.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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METALLlC BLUE
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Can anyone give me more information on this issue? It appears she's now also having this same problem with cigarrette smoke, such as when she goes into a room etc.
She's also having problems with:
Paracetamol w/Codein Artimisia Ceftin
We think this is a multiple chemical sensitivity but it's come out over the last year.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
You said her blood counts were dropping dangerously low -- which dropped the white count or the red count or both ???
If the blood counts were dropping I don't think this is an allergy issue. More likely the meds were hitting which ever infection she has. White counts would drop with Ehrlichia treatment and very high doses of antibiotics in general.
Red counts can drop with either Bart or Babs.
Have never heard of allergy or MCS causing blood counts to drop.
Bea Seibert
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Aniek
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Cigarette smoke is one of the toxins I'm supposed to stay away from according to the genetic testing. I'm thinking she has a toxin overload and needs to detox and stay away from as many toxins as possible.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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METALLlC BLUE
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quote: You said her blood counts were dropping dangerously low -- which dropped the white count or the red count or both ???
White blood counts. We believe it was the: Rifampin and Bactrim only. We think those issues are separate from what is happening now, but they both constituted a "toxic" effect of sorts. The new problems seem to be unrelated to the medications side effects, and a response of the body itself.
quote: If the blood counts were dropping I don't think this is an allergy issue. More likely the meds were hitting which ever infection she has. White counts would drop with Ehrlichia treatment and very high doses of antibiotics in general.
Red counts can drop with either Bart or Babs.
We're aware of this information. The major problem now is debilitating fatigue following any medication, about 2 hours now.
quote: Have never heard of allergy or MCS causing blood counts to drop.
We don't believe the blood counts are related to the MCS. The blood counts were likely just side effects of the drugs.
quote: Cigarette smoke is one of the toxins I'm supposed to stay away from according to the genetic testing. I'm thinking she has a toxin overload and needs to detox and stay away from as many toxins as possible.
This is information we've considered but it's not specific enough for us to really understand the underlying problem. Is there a specific type of doctor who deals with recovery or diagnosis of MCS? She's written down the information from the genetic testing information.
quote: Detox with Far Infrared Saunas and mixed herbals such as ACX from www.systemicformulas.com (ask for a local practitioner who carries this)
On the allergies / sensitivities, access www.naet.com for practitioners that do allergy and sensitivity elimination. I think we have had threads about that before.
We'll check into this. She lives in Italy, so the issue is quite frustrating.
quote: There are also effective mixed herbals (specific parts of different herbs blended in specific rations) that can deal with changing the terrain and supporting specific organs to help the lyme want to leave. Or die !
This we're aware of. Thank you for all your information - all of you.
If anyone has further information or direct experience, please chime in.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Rianna
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posted
When I 1st started treatment I was on 4gms Rocephin + 800mg Ketek and then Bicillin, Ketek 800mg and mepron and then suddenly I could not tollerate any dosage - not even a 1/4 pill.
My LLMD run the genetic 5HLA defect test and I had an inablility to detox - after 4 months of intensive detox I can now tollerate ab's again but only IV
This is a great article that explains what happens - my LLMD says he sees this in 15-20% off his patients
Aniek
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posted
There is no doctor I know of that specializes in the genetic testing and treatment. The Detoxigenomics test through Genova comes with recommendations to the doctor of medications and toxins to stay away from along with recommended supplements.
There are at least two LLMDs using it now, which I'm picking up on from comments here. One is in VA but doesn't take out of state patients. The other is in NJ I think. I know the alternative medicine office I go to for infusions uses it, so you might be able to call alternative and complementary medicine practices near you and just ask if they use that test.
The underlying problem this test shows is polymorphisms on genes that create the enzymes that detoxify through the liver. If you have a polymorphism, you can't detoxify certain toxins as well as others. That's why there is a correlation to cancer. People who have the lung cancer gene have one of these polymorphisms. They are more likely to get lung cancer if they smoke than other smokers because they don't detoxify properly.
It is helpful to know the answers, because your girlfriend will know what type of medications to stay away from. She won't be poisoning herself by taking ones that she can't tolerate. She can also start supplements that help the detoxification process to clear her system and deal with everyday toxins.
I know this test might sound kind of crazy. They actually use a similar test in hospitals before giving people coumadin now to determine what dose they should give. They never used to understand why some people needed a high dose and other people's blood got dangerously thin on a normal dose. It now takes weeks instead of months to find the right dose and probably prevents strokes in that time period.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Aniek
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The Detoxigenomics test through Genova labs is actually very specific. It tells you the different polymorphisms that you have and what toxins you should stay away from as a result. It is not just the one gene test that others have mentioned.
It provides the doctor with a list of medications you should not take and a list of supplements that will help the detoxification process. So your girlfriend will know what is going to be "poison" before she actually takes it.
You may have seen recent news reports that smokers with a certain gene are more likely to get lung cancer than other smokers. They are talking about a polymorphism on a gene and it is one of the polymorphisms this test looks for. Because the toxin isn't detoxified by the body, cancer is more likely.
I don't know a doctor to recommend, my doctor does not treat out of state patients. But you might want to just call naturopaths or alternative and complementary medical practices in the area and ask if they use the test. Every practice I've been to that uses complementary medicine tests through this lab.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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CherylSue
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I had asked my LLMd about a gene test, and he said there was none. Where can I find a doctor that utilizes this test?
Sixgoofykids, does your Dr. H utilize this test? Have you had this done?
Thanks, Cherylsue
Posts: 1954 | From Illinois | Registered: Aug 2007
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Rianna
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For myslef as I said I could tollerate any antibiotic for over a year and then nothing so for some it is not what drug you can tollerate it is the inability to clear the die off Neurotoxin. An example is I took ketek for 6 months at 800mg and then suddenly could not even tollerate 25mg although after 4 months of detox I can now tollerate ab's again.
I therefore personally beleive the key is that your toxin load becomes so high you can not tollerate anything and when it is lowered you can start AB's again.
This Geonomix test is good to see what meds you can tollerate but it is not the complete picture as you need to ensure you work with a good LLMD that runs a complex detox regime alongside your Antibiotics.
CherylSue
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posted
Yes, I think Rianna is on to something here. I am very sensitive to meds and doxycyline was the only one I could tolerate halfway. Now that I'm in a relapse I can't even tolerate cumanda or doxy.
Should I just lay low for awhile and concentrate on detox to get through this relapse? I'm getting tightness in my chest ( from doxy? stress?) and on the verge of panic attacks. I just took 2 charcoal to calm down.
Rianna, did you just detox for four months without any killing agents?
What are symptoms of babs? Do you have to get headaches? I usually don't. But I do feel weakness, occasional heart palps, and crave fresh air. My initial illness was high fever, chills and drenching sweats like I never had in my life.
Desperate in Chicagoland,
CherylSue
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Aniek
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Cherylsue, this is a link to the lab is used. Click on "patients" on the right side and there is a "practitioner directory" link on the left.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Aniek
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quote:Originally posted by ralph: For the NAET allergy practitioners, access www.naet.com - I was just there and there are some practitioners listed for Italy.
Italy? I'm going to start using one of those practitioners so I have an excuse to go to Italy every few months. I think food poisoning in Italy triggered my flair 5 years ago that led to my diagnosis. I can use that as my excuse to need a practitioner in Italy.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Keebler
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posted
-
PORPHYRIA ?
Porphyria could be a consideration. If she has relatives who ever were very sensitive to alcohol, certain drugs (esp. steroids) - or to stress - this might a clue. Hyper-sensitivity to light, noise and exercise are common with most of the porphryias.
It's very complex and I feel like I should apologize for even suggesting it, however, it can be life-saving to know if this is a player. In some cases, a herx may (in part or whole) be the result of excess porphryins (articles by Jim Kepner below explain).
There are over 11 genetic types, depending upon which specific enzymes are deficient, resulting in the liver being unable to detox xenobiotic substances through the Cytochrome P-450 pathway (which in itself has other, more specific pathway numbers).
Unlike some of the digestive enzymes, the specific enzymes which are missing in porphryia are not available to take as a supplement (although there may be advances in that coming along). Still, there are some supplements, still, that are very helpful but I'll only touch on that at the end. That's another whole topic in itself. Low-heat sauna and massage would be of benefit.
Testing requires blood, 24-hour urine and 24-hour stool collection to be sent to a speciality lab. While urine or blood may show results, unless all three methods of testing are done, it is not a complete test. A person may have more than one type and each type requires slightly different therapy.
Some types cause skin trouble even with the slightest sun exposure, but not all types have this feature.
Everyone has porphryins a by-product of metabolism. the problem occurs when there is a build-up of these, causing a array of problems that can be confused with herx symptoms.
Porphryia, as most of the few doctors who know about this, is mostly seen as a genetic condition, and acute.
Other doctor have come to realize it can be acquired through certain infections, or chemical exposures (farm, household, drug, etc.) and that it can be more chronic, resulting in symptoms much like Chronic Fatigue, brain fog, neuro symtoms, etc. of an on-going nature.
Fasting or dieting can make it worse (and even be fatal) in those with diagnosed porphryias. Explanation of that below at the links. High protein meats are to be avoided (other dietary hints in links below).
Frequent meals with attention to carbohydrates are suggested. If porphyria is a player, there are ways to address candida and balance blood sugars while still eating correctly to avoid excess porphryins. Again, another whole subject.
The chronic porphyria symptoms are much like CFS, FM, and lyme and can be chronic. In that case, the porphyrin levels may not reach the emergency state of acute attacks but, nonetheless, can cause damage to the body.
CFS researchers, over a decade ago, posed the possibility of a "psuedo-porphryia" in the CFS population extremely sensitive to even tiny amounts of drugs. The term "pseudo" posed problems with other doctors tagging it psychological so that term really was not as accurate as "secondary" porphryia.
Secondary porphyria can be chronic, but may not be the same. It might be possible for a person without any of the genetic porphryrias to have secondary porphyria as a result of an infection or too many stressors (i.e. high amounts of drugs) on the liver detox system. However, when these stressors passed, the person may experience no further problems.
While the drugs on the porphryia lists are the most offending agents, any drug can cause a problem if the total overload is just too high.
However, as porphryia can be fatal in certain circumstances, genetic testing or a good work up at a lab might be in order to protect from future exposures of offending drugs or chemicals.
It can also run in families and be dormat until a particular point when the liver is just too taxed.
Glucose, beta carotene are just too of the things that can stop a porphryia attack, however, in acute cases, ER staff have better choices through IV tubes. Many doctors and many ER doctors are not familar with this or they think the only symptoms are psychiatric (as in King George III)- and that is simply not accurate.
Heavy metals can also contribute to high porphyrins.
There is a "Poor Man's Porphyria Test" but it is not accurate for all types of porphryia - and a genetic porphryia can be present but symptoms be under the radar for most of one's life. However, if urine does turn dark in the sunshine, that can be very telling. Also, depending upon the exact type of porphyria, urine can turn different colors other than the legend purple.
Again, though, some porphryias cannot be tested with urine and require blood or stool tests. Anytime someone has a gallbladder out, it would be wise to test that for excess porphryins, too.
The inability to tolerate even tiny amounts of alcohol or drugs that are on the C P-450 list may be one indication as well as multiple chemical sensitives (perfumes, diesel exhaust, printing ink, etc.)
So excess porphyrins can happen to anyone from just too high a load for the liver. It is a very hard task to determine if it's "seconardy" and will pass as the liver is asked to do less or if there is a reason to seek professional help and adopt a program of avoidance of C-P 450 drugs, chemicals.
This field of study is gaining awareness. Perhaps some of the links below will be of help.
Now, it could be that a multiple chemical sensitivity could also be a neurological symptom, too, sort of a brain allergy . . . it could be a "chicken and egg" thing. Liver-related porphryia affects the brain, but there may be cases of the brain being sensitive, independent of the liver.
As well, if a person's gut is "leaky" the drugs and other toxins get out of the gut and result in a toxic load on the body. Certain drugs can compromise the gut lining as can gluten in those who are gluten sensitive or have celiac.
(especially see http://tinyurl.com/5554mv - Metabolization of porphyrinogenic agents in brain: involvement of the phase I drug metabolizing system. A comparative study in liver and kidney. 2007 )
Secondary Porphyria: what you should know before starting a CAP (poster's note: that would be a Chlamydia Pneumonia protocol, similar to the lyme protocol) - by Jim Kepner
excerpt:
Symptoms of Porphyria- Porphyria may affect the nervous system or the skin.
When porphyria affects the nervous system, it can cause:
chest pain shortness of breath abdominal pain
nausea muscle cramps weakness
hallucinations depression anxiety
paranoia seizures
- full article at link above =================
Knowledge of porphryia can benefit many -
Fatalities from acute attacks w/ no treatment have been noted in many sources. From the high incidence of drug-related deaths each year, it is highly possible that many of those cases involved undiagnosed/untreated porphryia, whether of genetic or secondary nature.
Acute attacks may require emergency measures that can literally save a life. However, with chronic on-going symptoms, there are ways to manage it.
In addition to avoidance of chemicals and dietary measures (avoiding Atkins diet especially: http://tinyurl.com/4j58r9 ) . . .
GENTLE detox measures, there are certain herbal supplements that have, in studies, helped to increase the liver's capacity to metabolize C P-450 substances. FAST detox measures can be disaster, however, without expert medical care.
Use only natural cleaning products, etc. avoid new carpet, paints, etc.
Eating only foods grown organically or without added chemicals if vital.
Schizandra Berry, Milk Thistle are just two of those. I'll look up my notes on that and post later.
DMSA has shown to lower porphryins in autistic children. My guess is that if heavy metals were present that the DMSA lighted the load. I'll come back with the abstract on that later, or go to PubMed and search: "DMSA, austistic, porphryins" (or porphyria)
And - if porphyria is a player, while certain drugs can complicate things, it is very important that infections be treated as infections themselves can contribute to excess porphyrins.
-
[ 11. May 2008, 02:42 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Vitamin C is a great detoxer. The website "doctor yourself" has a lot of information about vitamin C.
Dr. Frederick Klenner pioneered using vitamin C and left information on how he used it. It was the core of most of his protocols, but not the only thing he used. It is easy to use and cheap.
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groovy2
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posted
Hi Blue
What I did to detox was use Ultimate Cleanse by Natures Secret -- about $25 Online- Read the ingredients- Has Everything needed for detox -
One Box is enough for 3 to 4 treatments - one month total
Toxins will be released and you have Very Bad BO ect for several Days - about 4 plus -
-I was Really surprised how Bad I smelled - beyond description --
Herx will increase for a while also
(Take 5 or more warm showers aday)
During and AFTER the cleanse it is Important to drink 3 Plus gallons of Warm Tea aday - Green tea May be Best
Drink this much Warm tea Daily -
It made a Huge Difference for me -
I was able to Take Very Large doses of ABX with Much Less side effects -
If I missed a day or 2 of drinking enough tea I would get toxic crud feeling until I upped tea intake again--
My Liver tests come back Perfect and my doctor is Always surprised that my tests are so clean even on Large doses of Many ABX --
If your wife dose not have a Glass of tea or water in her hand right Now - she is Not drinking enough --
Most Fruit juices are Not good for detox -Lemon and Cranberry are good tho -
Hope this Helps --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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CherylSue
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Good thread. Any other ideas for agressive detox?
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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jamescase20
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posted
Guys, I knew from my past I am not alergic to ABX. Yet when I first started taking ABX I became violently ill. Severe runs, violent vomitting, etc. In like 15 seconds after taking bactrim. But knowing I was not alergic, I just took the pills even though I was blowing chunks. Guess what? slowly went away. So it appears to me be a herx. NOT an alergy. Food for thought.
Lexapro ALSO did it, and in fact it was horrible, but I just took more and more, and about 2 weeks later, I felt WAY less sick. Actually, like the flu was over, but I was now shot. Thats my thoughts. Just be sure....it maybe a herx. This bug wants you to NOT treat it. rememember that.
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