Hambone
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posted
I wholeheartedly agree that improving our immune system is key if we want to heal from Lyme.
If 80% of our immune system is in the gut, and we keep blasting our poor GI tracts with antibiotics...
how in the world can you heal this part of the immune system?
Seems to me that taking probiotics while taking antibiotics, while necessary, just isn't enough because we kill them almost as soon as we take them, and they have no time to take root and grow to protect us.
Just seems to me that even though you have to kill the bacteria with abx's, you also are shooting your immune system to hell at the same time, and you will never get better.
My white blood cells are great, my natural killer cells are elevated and fighting, but my gut SIgA is in the toilet. I have practically no GI immunity.
I really don't know what I'm asking. I'm just wondering how it's possible to heal if we keep weakening our immune systems with abx's.
Is it just something you have to constantly stay on top of until you gain the upper hand with the bacteria? Like a sword fight...probiotics vs antibiotics?
I keep thinking about one of Dr. J's patients I spoke with and she told me he didn't do much, if anything, about working on the immune system and detoxing. He just focused on blasting her with abx's. Yet, she got better. How is that possible?
I hope I'm making some sort of sense. I feel defeated today and just trying to make some sense of all this...trying to be sure I'm not missing something.
Posts: 1142 | From South | Registered: Dec 2010
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TF
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Well, I got rid of these diseases 6 years ago by going to a Burrascano type doctor.
So, my guess is that the antibiotics are pretty much taking the place of the immune system while we are killing lyme and company.
Then, when we are done killing the diseases, our gut immune system comes back and takes care of the remaining few germs that are still hanging around and also keeps us in remission.
Also, white blood cells fight infection, and they are in the blood rather than in the gut. So, our immune system is also in our blood.
To strengthen my immune system, I did the Burrascano 1 hour weight lifting program, every other day, as described in the Guidelines.
Burrascano says that weight lifting lowers the immune system the day you do it, but it bounces back higher than before the next day. So, that is the rationale for doing it and doing it every other day.
My lyme doc told me I would never get well unless I did this exercise. That's what Burrascano says also. From page 31:
"Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission."
My white blood cell count went low while treating lyme. This shows that the body is looking to the antibiotics to take care of infection and is making few white blood cells to do the job. When that happened, my doc had me take Transfer Factor. It brought the white blood cell count right up.
In addition, he had me drink kefir every day, which I understand is better than yogurt and probiotics for repopulating the gut. Burrasacano says to drink this also.
He also had me eat raw garlic twice per day (or Kyolic) to help boost the immune system. No drinking alcohol or smoking is also to help the immune system.
So, just like with cancer patients who have to take Cipro (a broad spectrum antibiotic) to replace their destroyed immune system, we do the same.
Lyme and babs compromise the immune system. So, we have no choice but to kill them first and then strengthen the immune system as we go along with exercise, etc.
At the end of treatment, my doc restored my gut for 30 days by having me take diflucan, nystatin, Florastor and stay on the anti-yeast diet.
So, that's how I did it.
I don't really think abx weaken our immune system. They aid it. It is the diseases we have that are "compromising," that is destroying, our immune system. My lyme doc likened lyme disease to AIDS in this respect. So, the top priority has to be killing the disease.
I agree the cure kills all the good bacteria in the gut. That's why we keep replacing it throughout the day with probiotics, cultured vegetables, kefir, etc. That's how we keep it hanging on, I guess you could say.
Then, at the end, we bring it back to normal.
I am totally symptom free, enjoying my life. So, antibiotic treatment DOES work. It has also gotten rid of lyme for at least 4 of my friends.
Posts: 9931 | From Maryland | Registered: Dec 2007
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When hubby first got sick he lost about 30 pounds and had chronic gastritis -- the doc who did the scope said his entire stomach was inflamed from top to bottom.
Of course we had no idea at that time that it was probably due to bartonella or BLO.
Hubby also had some G.I. parasites which we treated with a very strong herbal tincture. His stomach did heal somewhat. Next scope maybe 6 months later still showed chronic gastritis but the inflamed area was much smaller.
So when we finally got the diagnosis of lyme after about 2 years we took a gamble and tried the herbal route. I have posted about that several times -- it was pretty much a disaster. It is debatable if the herbs were too strong or too weak. No question in my mind that the herx was too strong.
Then hubby found a LLMD neuro who put him on 2 months of IV Rocephin -- his first antibiotic. I had to stop almost every single dose 1 or 2 times to give him IV ativan for seizure-like spells. The med improved his symptoms maybe 25% but the improvements started going away within a week of stopping the IV's.
I still knew very little about lyme and tickborne diseases at that point and did not have a computer yet. So hubby struggled thru the next 6 months without antibiotics or herbs.
But an ACAM physician did put him on transfer factor that was supposed to be specific for lyme disease. Every time hubby took a pill it caused a seizure-like reaction within 30 minutes -- very similar to the reaction he had from the IV Rocephin. After about 2 months the reaction had decreased a little.
We eventually got to the Dr B who clinically diagnosed hubby with BLO and said he needed to be treated for that and babesia as well. But the thing that still remains unanswered to this day -- Dr B wanted hubby to stop the transfer factor -- he said it was stimulating the wrong part of his immune system? He had him take reishi mushroom supplements instead. My question is, "Did Dr B later change his mind about transfer factor and if so what research was that change in thinking based on?"
Hubby has tried several different herbal adaptogens -- honestly could not tell that any of them improved his immune system.
At one point his WBC did go low -- it stayed around 4.0 - 4.5 for a couple of years actually. What actually brought it back up was the med factive. So for hubby there is no doubt that bartonella or BLO was directly lowering his immune system.
I am sure hubby's immune response is still not optimal, but it is very expensive to test things like helper cells and suppressor cells etc on a regular basis. The WBC is not really specialized enough to tell you what is actually going on immune wise. Other issues like Th1 response versus Th2 response are also very much an issue.
It is very possible to have both an underactive and overactive immune system all at the same time if you measure the individual pieces.
I really need to get hubby back on something for his immune system, but just not sure what is the best choice.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Razzle
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Vitamin D increases the effectiveness of the macrophages, which are the cells that actually eat bacteria/viruses.
Mushrooms are good, BUT one must be able to handle the fungus...those with mold allergies may not be able to do them as easily.
sIgA is only part of the equation when it comes to the gut immune system. There also has to be a healthy brush boarder and mucosal lining. Inflammation in the lining of the gut by definition is unhealthy, thus can let through things that it shouldn't...i.e., "leaky gut."
Healing the gut won't necessarily be with high-dose probiotics...one has to support the mucus membrane's health. Vitamin A, L-Glutamine, Butyric Acid, Marshmallow Root (& other mucilagenous herbs), avoiding foods one is allergic/sensitive to, sufficient fluid intake, detoxing, and exercise are all important for mucus membrane health.
Others I know promote the use of aloe vera juice for healing the gut. However, the sulfur in the aloe juice is a known mucus membrane irritant and should be avoided by those with known inflammation in the gut. Use it after the inflammation is dealt with...
Also, some in the inflammatory bowel disease community believe that probiotics should also be limited when one has inflammation in the gut...I don't know that I totally agree, but I think the point they're trying to make is that things that may be healthy when the gut is not inflammed may leak through the inflammed area and get into places where it doesn't belong...thus setting up the potential for autoreactivity with our own "friendlies" that complicates much of IBD.
Just rambling...take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Hambone
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Whew!
Thank you...both of you! I knew somebody would come along and make me feel better about all this.
TF, I never looked at it as the abx's are doing the work of our immune system for now. That makes sense to me.
I have a practically brand new Total Gym sitting right here that I've used maybe 5 times in the past 3 years. Time to dust it off!
Bea, your poor hubby has just been through the ringer. I think of him often and how lucky he is to have you fighting for him. How is he feeling lately?
I have a friend whose 7 year old daughter has cancer and she's had her immune system blasted several times by high dose chemo, and she always just bounces right back immune-wise. I guess if she can come back from chemo, we can come back from abx's.
I feel better now. Thanks Posts: 1142 | From South | Registered: Dec 2010
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Hambone
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quote:Originally posted by Razzle: Vitamin D increases the effectiveness of the macrophages, which are the cells that actually eat bacteria/viruses.
Mushrooms are good, BUT one must be able to handle the fungus...those with mold allergies may not be able to do them as easily.
sIgA is only part of the equation when it comes to the gut immune system. There also has to be a healthy brush boarder and mucosal lining. Inflammation in the lining of the gut by definition is unhealthy, thus can let through things that it shouldn't...i.e., "leaky gut."
Healing the gut won't necessarily be with high-dose probiotics...one has to support the mucus membrane's health. Vitamin A, L-Glutamine, Butyric Acid, Marshmallow Root (& other mucilagenous herbs), avoiding foods one is allergic/sensitive to, sufficient fluid intake, detoxing, and exercise are all important for mucus membrane health.
Others I know promote the use of aloe vera juice for healing the gut. However, the sulfur in the aloe juice is a known mucus membrane irritant and should be avoided by those with known inflammation in the gut. Use it after the inflammation is dealt with...
Also, some in the inflammatory bowel disease community believe that probiotics should also be limited when one has inflammation in the gut...I don't know that I totally agree, but I think the point they're trying to make is that things that may be healthy when the gut is not inflammed may leak through the inflammed area and get into places where it doesn't belong...thus setting up the potential for autoreactivity with our own "friendlies" that complicates much of IBD.
Just rambling...take care,
Ramble away! This is all good to know. I appreciate it.
Posts: 1142 | From South | Registered: Dec 2010
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You asked how hubby is doing. That is a hard question to answer. It seems like the heavy duty treatment we are trying for babesia may not be going to work. But on the other hand he did add in IV flagyl 4 days ago and seems to be herxing from that. I guess that is a good sign, but he hardly ever has a fever and it was somewhat unexpected.
Will have a better idea if he can get through the next 45 days whether the babs treatment made any real difference or not -- 2 rounds down and 2 to go.
Razzle,
You made some very good points. Had not read about aloe maybe being a problem with actual G..I. irritation before.
It also needs to be noted that those with severe neuro lyme may have problems with glutamine. For hubby it causes seizure-like episodes. Glutamine is converted in the body into glutamic acid which is a neurotoxin.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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gwb
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I was told quite some time ago to drink aloe vera to help heal my stomach issues. I started taking it and a few days into it I noticed I would get hot flashes and jittery or anxiousness feelings.
I searched the internet and found that some people have bad reactions to aloe vera for several reasons, one being that it has latex in the plant which can cause an allergic reaction.
I did not know that I was allergic to latex, but after being tested for it I found out that I was allergic to aloe vera and had to stop drinking it.
I have no problems with aloe vera lotions, and I can use latex bandages without problems, but aloe vera isn't something I can tolerate internally.
Something to consider for those who might not be getting better taking aloe vera for your stomach.
posted
Hi Hambone I think that part of the answer to your question may be (I am not a doctor, please do check out every word here with your doctor for his/her opinion):
A) Keep the gut in good health. That means probiotics oh yes. But much more. Antibiotics (*can* in some people, which does not mean that it always *Does*) have the side effect of inflammatory bowel syndrome, in my best understanding.
That being the case, to do marshmallow root as posted by a very astute person above, digestive enzymes, and other mucillagenous herbs would be key.
I think alongside abx therapy it is absolutely very important to take extra good care of the gut. This goes beyond pbx, it means good gut lining maintenance. Because it can be at risk under longterm abx therapy, in my best understanding (again I am not a doctor). I would think if extra steps were taken to take care of it, so long as they were the right steps, things should probably be okay. Or at least, a lot better off than if not doing anything about it.
Mucillage from herbs are a gel-like constituent that shield the gut lining and also soothe inflamed tissues. They render the digestive linings and villi (finger-like folds) more flexible so foods and waste can move along more freely.
Marshmallow root is the highest source of mucillage, more than 80%, according to herbal pharmacist Elizabeth Williams in her book Potters Herbal Cyclopedia!
A good high-mucillage tea that is a gentle detoxifier is called Polari-Tea, google it and add marshmallow root to the mix. Very soothing.
CAUTION: Marshmallow root may interfere with mainstream drug absorption and should be taken about three hours before/after medication
quote: "Dr B wanted hubby to stop the transfer factor -- he said it was stimulating the wrong part of his immune system? He had him take reishi mushroom supplements instead. My question is, "Did Dr B later change his mind about transfer factor and if so what research was that change in thinking based on?"
Again I am not a doctor. What I understand is that immune cells all need to be balanced in ratio to one another. So to tip the scales in the wrong direction with any particular product----herbs, supplements or medications---is of course contra-indicated. This can make the difference between immune sluggishness or immune hyper-reactivity, in my best understanding. (Of course many other factors weigh in too, like leaky gut et al. That's another topic).
So he may not have changed his mind, that's at least my humble read on it. He may simply have thought that it would unbalance your husband's immune cells and this is something that requires individual consideration. There is no textbook case when it comes to herbs, nutrition or of course and needless to say, medications.
c) Gary I am interested to know where you got the information about latex in the aloe plant? Can you provide a link or source?
Allergic reactions would occur if adrenal function is low, is my thinking (but again I am not a doctor and this is not a diagnosis, only a guess. For further info, read Dr Kurt Donsbach's booklet, Allergies).
d)Razzle:
Aloe contains a lot of mucillage (Which soothes irritated digestive linings) to make up for any sulfur content in the herb. In fact it is used for ulcers et al, though the slightly bitter flavor can induce bile from the liver which can contribute to hyper-acidic conditions. Most people wouldn't respond this way but there is a slim chance of it with a few sensitive or affected people. In most cases, aloe actually can be very supportive in soothing irritated gut membranes. We have to remember with plants that it is not one constituent acting alone, but the whole plant wiht all its constituents acting together.
Further reading: Potters Herbal Cyclopedia by Elizabeth Williams (lists herbal constituents, studies, and lay person's information about herb use).
See also the website [URL=http://www.healthy.net]www.healthy.net go to Herbal MEdicine Center, look up individual herbs. This is very reliable information.
CAUTION: Aloe and other medications or herbs which induce peristalisis in the bowel, ie contractions which push food and waste along the digestive tract, may cause bowel habituation. In other words, may cause dependence and the body's own ability to do peristalisis is impaired. Aloe is said to be safe in two-week dosages but no more by some herbal authorities whose books I have read. Same holds true for other laxative herbs, with the exceptions of marshmallow and the Ayurvedic blend triphala, which have nothing to do with peristalisis. So they don't cause dependence, and are safe (even desireable) for longterm use.
E) Razzle again:
About leaky gut and bacterial migration if you take pbx, you have a point. But according to the book Herb, Nutrient and Drug Interactions which I own and which is written by an MD, ND and world-ranking herbalist, such infections from probiotics are extremely rare and there is a mass safety record with pbx. They wrote of only a few reported cases, all of which were people with severe auto-immune attack and conditions such as a deformed infant's gut or an elderly woman with diabetes and auto-immune tendencies. The Finnish government also notes very few infection rates and a high safety record, so it' s not just these peoples' opinions either. I would think that leaky gut is much! more likely to happen in absence of pbx than if taking them.
Anybody who has any concerns about this should talk to their doctor.
Razzle again:
CAUTION: My LLMD said that L-Glutamine converts to glutamate in the body, a nervous system excitant. L-glutamine can be very helpful in restoring a leaky gut, but also would be contra-indicated for lyme patients with nerve agitation, stabbing pains, etc. It would probably be okay in sluggish or exhausted conditions, but not where agitation exists. There are many herbs and supplements which can rebuild the gut lining. For further information, see clinical nutritionist Elizabeth Lipski's excellent booklet, Leaky Gut Syndrome or her other book, Digestive Wellness.
F) Triphala may be a very good way to shield the gut from irritation by abx by the way, as would marshmallow. Good adjunct therapy, so long as (in the case of triphala) no hyperacidity is present. (Marshmallow root would help with any hyperacidic conditions). I would also do digestive enzymes for gut health alongside abx.
G) A source of immune-supporting medicinal mushrooms which I would trust: Fungi Perfecti. This is the hand-harvested product of a herbalist/researcher who is *deeply!* scientifically immersed and very thorough. I am quite sure he would know exactly how to dry his mushrooms to assure less mold growth. IT's all a matter of how herbs are harvested and prepared, that's the key thing. If harvested in inferior conditions, and not properly treated, then yes there can be mold and other problems. If properly treated and harvested under good conditions, there should'nt be a problem. Of course anomalies can happen but that is the case with everything under the sun.
In conclusion, even while my own personal lay person's opinion (based on experience and extensive reading, each alike) is that a leaky gut or other gut compromise will cause very serious immune issues, so will the spirochetes. I agree with the analysis that to treat them is key.
However I would make sure I was doing a rigorous gut lining maintenance program (beyond mere pbx as above) alongside the abx. I also would want to rule out any leaky gut prior to commencing. If any leaky gut, irritable bowel or other GI issues were present, I would want to talk to my doctor about this to develop a treatment plan,perhaps even prior to commencing lyme therapy, though that is for your doctor to determine and not some lay opinion.
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. This is for your education only and is offered as questions to be asked of your doctor, not as medical advice. Any use of this information in any other context is breaching the intent of the information and of the author.
posted
PS I did not know that T cells can drop with abx use.
This does not sound good to me at all.
T cells are the traffic policemen of the immune system, telling other immune cells what to do. Without T cell levels being healthy, the immune function sum total would be "Down". (Excess T cell levels is not desireable either, it's balance that one needs to achieve. And of course, this requires professional medical guidance).
I would be asking my doctor about this potentially very serious side effect and which abx can be used that do not cause this.
I cannot and am not qualified to advise anybody else, but for my own self I rather seriously question the analysis that says that dropped T cell numbers is a good sign that the abx are doing the immune system's own job.
I would want to ask my doctor for his/her analysis about this.
Naturopaths on the Healthy.net site (here it is only the very renowned ones who post, this is not just any old anybody talking) are saying that T cell drops after cancer chemotherapy may be what ultimately takes cancer patients' lives, more so than the cancer itself. That is at least their opinion. Professional opinions and schools of thought may vary.
This would concern me and I would want to know what my doctor's plans were to keep my t cells healthy and flourishing if lowered T cell production was a side effect from the medication.
There are plenty of adjunct supports that could help keep the t cells healthy. Do a subject search here: www.healthy.net and be sure to ask your doctor about drug-herb/nutrient interactions before you proceed.
I hope I am not scaring anybody and remember again that I am not a doctor. This is a widely-read *layperson's* *opinion*, nothing more. If you have any questions or concerns, talk with the doctor whom you trust. If necessary, ask for several opinions, it can't hurt.
Razzle
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If I get aloe on a mucus membrane, I feel a lot of irritation. I know of a lot of folks in the IBD community who cannot tolerate aloe too...so I question that the sulfur is offset by mucilagenous properties in the aloe. Furthermore, if one has difficulty processing certain forms of sulfur (such as sulfites), then it is possible for there to be an increased issue with the sulfur from aloe...I believe that this contributes to difficulty tolerating aloe in my situation.
Also, yes, I'm sorry I forgot to mention the L-glutamine can be problematic for some.
My reference to potential issues with mushrooms in those who are mold allergic is to address the possibility of allergic reactivity to mushrooms due to cross-reactivity between mushrooms and mold. I've witnessed such a reaction to mushrooms in someone who is highly mold-allergic.
I wasn't trying to say the probiotics CAUSE leaky gut, but rather that taking probiotics when leaky gut already exists (i.e., if the gut has inflammation) could potentially be an issue for some more sensitive individuals.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Hambone
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I've tried Aloe and I do get the irritation feeling. I never last more than 2-3 days trying it, but every now and then I try again.
I think I might dust off my Maker's Diet book and will myself into eating that way again for now. The author healed himself of terminal Chron's Disease with that diet. It supposedly very gut healing.
Ugh. It stinks to be sick. This is so not what I want to be studying and worrying about.
Posts: 1142 | From South | Registered: Dec 2010
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I think I left out the part about where hubby spent lots of money for numerous tests of his immune system while we were looking for a diagnosis. They tested t helper and t suppressor cells numerous times.
His ratio was always off -- suppressor cells were always low and helper cells were also low. This was an effect of the tickborne infections -- years before he took any antibiotics. At that time his WBC were normal.
This is partly why I say it is very difficult to measure your immune system cheaply to see if an immune modulator or adaptogen is helping.
Not sure if antibiotics depress the helper cells or suppressor cells?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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chiquita incognita
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Razzle, you are absolutely right on many counts. The mushrooms can easily carry molds and those who are allergic to it would have troubles.
Again that's why it's truly important to have a source that one can trust. If the mushrooms are well processed and grown, then they can be very immune-benefiting.
As for aloe causing irritation in the gut, I can see a case for that too, surely. There are people who respond very, very well to it and find it truly helpful, and others who don't respond well to it. Thank you for mentioning this.
There are many herbs and supplements that can help a leaky gut.
Plantain and calendula are both high in allantoins which are wound healers, marshmallow root may not seal up the gut lining per se but will help cool down inflammation and help the gut lining to be more flexible and therefore aid digestion and persistalsis alike. The herb Meadowsweet, from which aspirin used to be made, contains the anti-inflammatory salycins but also lots of mucillage to shield the gut, so it used to be used for ulcers and would not hurt the gut at all. Deglycerinated licorice is also a standard for irritated and leaky gut tissues. Be sure to get teh stuff marked DGL on the bottle, the stuff without the glycerrhizin removed can raise blood pressure. The DGL stuff is fine and can help the gut lining as said.
There are many nutrients too which help leaky gut but I don't know them off the top of my head. Vitamin C and bioflavonoids would help (not be the whole picture) because they build collagen, the cement of cells.
YOu can read more in Elizabeth Lipski, CCN MS booklet Leaky Gut Syndrome or in her book Digestive Wellness.
Bea you are so sharp as usual. Thank you! I don't know the answer to your question, which T cell types are suppressed by abx or even which abx will cause the t cells to drop. I am alarmed however and would want to check into this potentially very serious side effect very carefully.
Wishing you all the best and thanks for such a productive pow-wow! This is great, I learn so much from everybody here and thank you all. CI
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. This is for your education only, be sure to ask your doctor before implementing anything mentioned here.
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Razzle
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Hi Chiquita incognita,
Thanks for your info, it is good to read more about all this stuff.
I want to clarify again what I was talking about with the mushrooms & mold allergies. I'm not talking about allergic reactions to the mold growing on the mushrooms, I'm talking about allergic reactions to the proteins in the mushrooms themselves, due to similarities to proteins in other molds to which one is allergic.
To clarify: For example, birch pollen and apple protein share similar structures. Thus, if one has a birch pollen allergy and experiences a reaction from eating raw apples, then it is possible the birch pollen antibodies are sticking to the part of the apple protein that is similar to the birch protein.
The same thing could happen with mushroom proteins if one has a mold allergy.
Does that clarify what I'm trying to say, I hope?
Thanks & take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
I don't know if this has been mentioned before (my mind is a sieve lately) but avoiding gluten and sometimes casein is typically a part of gut health protocols.
Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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chiquita incognita
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Thanks, Razzle. That is interesting information. Sources, links? I would like to check into this further.
Thanks, CI
ps this is entirely possible, an allergic reaction yes. That said, there are cancer patients who greatly benefit from medicinal mushrooms, and one man's HIV case was reversed---zero infection in his blood---attributed to shiitake mushroom extract. There are other AIDS cases who benefit too. So it all has to be kept in mind and all weighed in the balance, taking exception for individualized allergic cases. I would like to read more about this, thank you Razzle. Interested in your information about protein structure similarities too, links et al?
The above information has not been evaluated by the FDA and does not diagnose, cure or prevent any disease. Drugs and herbs may interact, talk with your doctor. This is for your education only and is not for self-treatment, make sure your doctor approves any regimens you do.
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Razzle
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Chiquita incognita,
Most of my info about allergies came initially from a very savvy Allergist. He was the first person to figure out why I have such a huge list of foods and other things to which I'm allergic/sensitive. The common threads in most of my tolerance/allergy issues are due to sulfites, botannical cross-reactivity, and/or gluten sensitivity. And of course, Lyme has just made all this stuff a whole lot more difficult to deal with...
More info about cross-reactivity between different foods or between food & inhalants:
And don't believe the whole thing about food-pollen cross-reactivity only causing oral allergy syndrome (OAS) or that OAS is not really a "true" allergy...I know of many who have much more serious reactions due to cross-reactivity (myself included) between foods in the same botanical family, or between inhalants (such as pollen) & foods from the same or related botanical families.
I tried to reply to your PM but your mailbox is full...
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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chiquita incognita
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Thanks Razzle, this is great!!!
If there is a lot of hyper-reactivity going on, I would wonder about leaky gut. But it sounds like you are very aware of that one already! Your allergist sounds fabulous! Thanks for all this info and I look forward to reading it! Best wishes, CI
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chiquita incognita
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PS adrenals figure prominently with allergies and reactivity, as does the liver.
Here two books that I highly recommend:
Natural Therapy for your Liver by Christopher Hobbs, LAc
Allergies by Kurt Donsbach
Then of course there is Leaky Gut Syndrome by Elizabeth Lipski CCN MS
T cells are the traffic policemen of the immune system, telling other immune cells what to do. Without T cell levels being healthy, the immune function sum total would be "Down". (Excess T cell levels is not desireable either, it's balance that one needs to achieve. And of course, this requires professional medical guidance).
To be specific I think you are referring to the CD-4 or T-4 cells which are sometimes referred to as the brain, or policeperson, of the T cell mediated immune response. These are the cells that are implicated in HIV infection. When they are infected by the HIV virus they can throw the whole immune system into chaos since they instruct other cells what to do. In the old days the CD4 count in HIV disease was the main marker for disease correction
Posts: 357 | From California | Registered: Jun 2010
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Razzle
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My Naturopath believes the reason I have such problems with allergies is because I have some kind of deficiency of CD8 T-Cells. The CD-8 T-Cells regulate or help to control inflammation (inflammation from tissue injury, infection, allergy, etc.), but because there are not enough of them to go around, I tend to respond to everything with too much inflammation. My Sed Rate has been as high as 102 (normal is less than 20), and my Allergist freaked out when he saw how high it was. That, plus the Lymphocyte Subset panel got me a diagnosis of immune deficiency, specifically of the CD8 T-Cells. I also tend to run on the low side of the normal range for CD-4 T-Cells, B-Cells, CD-56 NK cells, and the CD-57 NK cells.
Yeah, I agree leaky gut is an issue - however in my case, I believe immune deficiency and bad genes (family history of autoimmunity) came first...and then the Lyme, leaky gut, allergies, etc. started from there...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Hambone
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quote:Originally posted by Razzle: My Sed Rate has been as high as 102 (normal is less than 20),
Holy moley ! I thought mine was bad at 46. Gawd you must feel terrible.
I once had a doctor tell me my SED rate was that high because I "may have bumped myself on something". He actually told me that bumping a baby toe would send a SED rate up.
My ob-gyn said that doctor was full of crap.
Posts: 1142 | From South | Registered: Dec 2010
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Razzle
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posted
I messed up giving the Lymphocyte subset stuff. The CD57 is below normal. CD56 NK cells are low-normal. CD4 can be low-normal or too low. CD8 is always too low. B-Cells are sometimes too low, sometimes low-normal. CD4:CD8 ratio is usually too high.
My sed rate has been elevated since 2005 every time it is tested (was only intermittantly elevated prior to 2005). We took a car trip to Oregon that year, and my health took a nose-dive towards the end of the trip.
When I had that hugely elevated sed rate, I was also testing positive for ANA, and felt miserable. A liquid-only diet was the only thing that helped me feel better, so did exclusive liquid diet for about 2 months. I'm pretty sure Lyme was having a hay-day because the non-Lyme-Literate doctors kept trying to put me on immunosuppressants for the elevated sed rate...but I felt better off rather than on them.
I agree with your ob-gyn.
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Carol in PA
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quote:Originally posted by Hambone: I'm just wondering how it's possible to heal if we keep weakening our immune systems with abx's.
This is one reason I'm not taking them. It's not a popular opinion around here.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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chiquita incognita
Unregistered
posted
Razzle, what does your ND say about hte cause of the low immune cells to begin with?
Couldn't leaky gut itself be a cause?
Chemicals, metals?
What does your ND say about T-cell-bolstering herbs in your case?
These might be questions to ask your ND.
Carol, I echo you. I am doing the herbs for as long as I can and as far as they will take me, and then thereafter I will peel the last layer of the onion with abx.
The more I am reading here, the more I am thinking that modulating immunity is a really important way to go.
I want to read more and more about this and learn as much as I can.
Carol, where would we each as lay people read up or take courses to learn how to properly balance immune cells?
Which med school courses would we take?
Are there online courses we could take, for those of us who are bed-ridden?
IMPORTANT!!
Whatever we learn would still need to be backed by a doctor's guidance, there is no greater danger than for a layperson to experiment with their own treatment and particularly their immune system. I do think that if we are armed with knowledge, we also can ask doctors better questions and thus come out ahead, ultimately. That would be the sole purpose of this studying and is emphatically what I would suggest for anybody even considering this. No layperson's mistakes, please!
Razzle
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posted
I'm sure it isn't metals because every time I'm tested for metals (don't get me started on this one, LOL!) I test negative. Been tested via hair tests, blood tests, urine tests, kinesiology/ART, and my own intuition and it's all normal except slightly elevated aluminum (probably from the TPN I was on for over 2 years).
Also, there are no known chemical exposures beyond what anyone else in my family has been exposed to (i.e., I never worked in a place with chemicals), and everyone else in my family is healthier than I am.
No known heavy mold exposure either.
So where did the low immune system come from? I was born about 4 weeks premature (I was even put in an incubator for a few days after birth because I couldn't hold my body temperature), so that by itself could have been a factor.
Add the early birth with bad genes and the stress my Mom was under when she was pregnant with me (thanks to my half-Sister) and that's probably where it came from.
Yes, leaky gut can reduce immunity, but it doesn't usually decrease T-cells as much as mine are decreased. There are many people with all sorts of versions (i.e., causes) of leaky gut who do not have low WBC and/or low T-cell counts.
My Naturopath is not too keen on trying me on the T-cell herbs (I don't even know which ones are useful for boosting CD8 T-cells) because I tend to react badly to tinkering with my immune system.
That said, we have seen improvement in my T-cell counts with homeopathic remedies (Acute ViroReliever, made by King Bio - I had trouble tolerating even part of a full dose when I first took it, but was gradually able to increase it without trouble) and also with antibiotics.
This tells me two things. 1) There is an infectious component to my T-cell deficiency. 2) There is also some other thing going on and my Allergist suspects possibly something is destroying the T-cells after they are released from my bone marrow (bone marrow biopsy was normal, so we know I have the capability to make enough immature T-cells). Whatever is destroying the T-cells could either be some problem in the maturation process (lymph glands/thymus/spleen) or an autoimmune process (this last thing is what my Allergist suspects, but we don't have any proof).
My Allergist tried to get me in to see a Lymphocyte specialist, but they didn't want to see me (the lymphocyte specialist was a pediatrician, so he probably wasn't interested in an adult with low CD8 counts).
I need to mention something else here - we don't know for absolute certain when I was first exposed to Lyme/coinfections. I never saw a tick nor a bull's eye rash. But based on symptoms, we've pinned it down to somewhere around age 4, and the only bug bite I can remember from that time was the bite of a red fire ant in the California desert. I've had 2 LL physicians tell me that the red fire ant could have infected me with Lyme/coinfections.
I test negative for all coinfections through Fry Labs (I did the entire panel of tests offered at the time), and when we tried an Ehrlichia & Anaplasma test through IGeneX, that also came up negative.
But more than one LL practitioner agrees that my symptoms suggest Bartonella and possibly Anaplasma.
If I do have Anaplasma, then that would be one possible explanation for the low T-cell counts. And it is possible that I got Anaplasma from some other way other than through the red fire ant bite... The Dr. K in WA suggested I had congenital Lyme, but I really don't know which parent might have had Lyme, and I'm not sure I agree.
Take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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chiquita incognita
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Hi Razzle Interesting that the homeopathics helped where other regimens set you off, thank you for that info! And the infection thing sounds right on too, of course. Though I am not a doc and cannot diagnose.
About chemical exposure: HAHA! We are kidding ourselves if we think that to work in a chemical plant is to be the only source of risk. Toddlers have been seen to have an excess of 200 chemicals in their bodies: www.insidebayarea.com/ci_2600879
Flame retardants in mattresses and oven mitts, household cleansers, pesticides, heavy metals in amalgam fillings and drinking water, MTBE and agricultural wastes in drinking water, hormones and abx fed to animals, more....contribute to our body's overwhelming chemical burden in our current chemically-based society.
I think every one of us, particularly lyme or patients of any immune-impacting illness, should take extra steps to a) cut back exposure b) detoxify as an important adjunct to our get-well process.
How can we heal if the chemical onslaught burdens our liver (causing allergic states) and nervous system (affected in lyme) and inhibiting immunity (obvious answer there)...?
Here is what I try to do to protect myself, this is not an all-inclusive list and is only for adjunct support:
Water filter of very high quality to filter out long list of chemicals, metals, etc: www.multipure.com
I use non-toxic household cleaners at the healthfood stores, and use essential oils for fragrance plus disinfecting qualities
Pesticide-free or organic foods wherever possible, hormone-free ditto
Liver and kidney cleansing herbs routinely, colon cleanses as needed
We use non-toxic homebuilding materials and paints whenever we have done a remodelling project in the past, see American Formulating Manufacturing or AFM's website for non-toxic home building and green building materials, non-toxic paints, etc
I would strongly suggest talking to your ND about detoxing of chemicals which we simply can't get away from, even in the paper we write on and wipe our mouths with.
I can't say specifically which immune cells are affected by which chemicals, but would have to wonder after the years of reading I have done and having recovered from environmental illness in teh past, if the T cells couldn't and woulnd't be affected by this chemical onslaught. After all, airplanes fly over Greenland.
The Environmental Working Group EWG has a website with a page where you can read about the specific health impacts of many chemicals in the environment.
FYI the American government allows 300 new chemicals every year into the environment without any testing whatsoever. Idiots, criminals. This is according to Elizabeth Lipski CCN MS's book, Digestive Wellness. THousands of chemicals are in our environment, and Greenland even can't be ruled out considering the afore-mentioned planes flying overhead. Detoxing is a must and immune impact is an obvious given.
Your ND's thoughts? I would be very interested in what s/he says about the T cells given all of the above, if you feel like reporting back to us and if this is not an invasion of your privacy. Thanks!
Razzle
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Member # 30398
posted
But my point was that my chemical exposure was no different from that of the rest of my family, and my parents were always pretty careful about using non-toxic cleaners, water filters, etc.
I now must drink water from one bottled water company (filtered tap water still contains something I'm allergic to in it), and I use non-toxic cleaners & detergents, etc., because I have a mild version of Multiple Chemical Sensitivities. I think the MCS comes from the nutrigenomic variants that make it harder for my liver to detox certain kinds of substances. And no, I can't do standard liver detoxing because everything used for that has too much sulfur in it and I get a reaction to it.
We also had a say in the paint used in our home, so we got the environmentally friendly low-odor type, and I still had to stay away from the house for a month before I could be in it. I'm allergic to latex, so this probably contributed.
The aluminum level is not hugely elevated, and that was from a hair test that was done a while ago. IV meds contain aluminum, and I've been on a fair amount of them since 7/08 when my gut & esophagus shut themselves down as a result of taking Japanese Knotweed (Buhner's Lyme protocol). I need to get my hair re-tested to see where I'm at now that I'm no longer on the TPN and IV abx, and only using my PICC right now for IV hydration.
My RBC nutrient panel results came back with nothing outside of the "normal" range, though calcium and selenium were at the lower end of the normal range, and magnesium was at the higher end of the normal range. I cannot take selenium supplements due to nutrigenomic variants that haven't been compensated for yet...working on getting info about how to do this, which is complicated due to conflicting info I was given initially after getting the nutrigenomic test results. A new doctor I've just started seeing says she can help me with this, so we'll see what she comes up with.
Thanks & take care,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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! I thought mine was bad at 46. Gawd you must feel terrible.![[loco]](graemlins/loco.gif)
doctor tell me my SED rate was that high because I "may have bumped myself on something". He actually told me that bumping a baby toe would send a SED rate up. 
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