Is there any way to make a herx less likely? Serious

[Wombat140]

I'm finally having tests done! Lyme disease and variosu other oddments. Waiting for the results to come back now.
I'd like to have more idea about certain things before I speak to my doctor. The thing is, things are very bad at the moment, and I don't know at all what we would do if there was a "herx".

What might make it less likely?
I saw a thread recently where someone's child had been being treated fairly successfully with herbs but was put on a combination of antibiotics to get rid of the last bit and got so much worse that they had to go back to the herbs.
Are herbs likely to be safer, herx-wise, than antibiotics? (That's assuming that our PANS doctor actually knows anything about herbs; I've no idea.)
Is starting on a lower dose of antibiotics a good idea?
Or with fewer different antibiotics at once rather than introducing several together?
Any help welcome. Terrified.

[ryan]

Hi! While herxing can be annoying, on the positive side, it does mean something is changing. To assist me (diagnosed with Lymes) and my 2 children (diagnosed with both Lymes and PANDAS) in managing potential herxing symptoms our M.D. provided the following suggestions, many of which we tried. Perhaps this might help you:

 

Natural Supports for the Healing Process

 

Please remember that sometimes when chronic infections are treated you may feel worse before you feel better. This is because when germs die they release substances toxic to the body. This process is called a Herxheimer reaction and often is referred to as “die off” or “herxing”. Also, when chronic infection or inflammation is treated, the body’s natural detoxification systems turn on, causing symptoms often referred to as “detox”. The symptoms of “die off” and “detox” can include bowel changes (especially constipation), nausea, fatigue, moodiness, irritability, headaches, muscle aches, hyperactivity, insomnia and sensory overload.

 

To alleviate such symptoms you may try some or all of the following. You do not need to use all of the supports mentioned but may add them as needed.

 

Hydrate. Adequate hydration is needed for healing.

Drink plenty of filtered water throughout the day with a goal of 64 oz daily.

 

Mineral Replacement. The healing process, especially gut healing, often results in loss of minerals.

Sole Water. Replace minerals with Sole Water which is a salt water made with Himalayan Sea Salt. This is a safe, effective and affordable way to replace minerals. Take 1 tsp of Sole Water Diluted in 8 oz of filtered water throughout the day. Please visit link for more information and recipe http://www.himalayancrystalsalt.com/sole-recipe.html

 

Bone broth. Bone broth is another great source of mineral replacement and also a potent anti-inflammatory. Additional benefits include amino acids, vitamins and healthy fats. In slow cooker put organic beef soup bones with marrow and meat, 32 oz filtered water, 1/8 cup apple cider vinegar, cook on low for 24-72 hours. Cool, strain, pour in glass jar, refrigerate. May cook with fat on top, use gelatinous broth for cooking and serve warm or cold in 2-4 oz portions throughout the day. See link for ordering organic bone broth. http://www.wisechoicemarket.com/bone-broth/

 

Epsom Salt Bath.

Epsom salt is Magnesium Sulfate Salt. Magnesium reduces stress, relaxes muscles, eliminates toxins through the skin and aides with constipation. For a bath mix 1-2 cups in warm bath and soak for 20 minutes. May repeat throughout the day as needed.

 

Treat Constipation. Toxins are eliminated in the stool, so constipation allows toxins to be reabsorbed into the body which worsens “die off” reactions and slows the healing process. Ensure a bowel movement at least 1 – 2 times/day

If constipation occurs, treat immediately with:

1. Hydration. Filtered water with a goal of 64 oz daily.

2. Sole Water. Take 1 tsp in 8 oz per day.

3. Mineral oil. Take 1 tablespoon twice daily until bowels move. This is a very safe intestinal lubricant, rather than a harsh laxative and will not interfere with medication or supplements. Available at any pharmacy.

4. If Mineral Oil alone is not effective, continue taking it and add:

Cascara Sagrada. This is a safe and gentle natural laxative. Take 1 cap (450 mg to 500 mg) in the am and at bedtime. If not effective then please call for advice. Available at Little Flower and most pharmacies and health food stores.

 

Treat Nausea or Stomach Upset

Activated Charcoal. Take 1 capsule 1 hour after meals to bind toxins and eliminate in the stool. Watch for constipation and treat if it occurs. Available at most pharmacies and health food stores.

 

Support the Liver. The liver is our major organ for detoxification. It needs support during the healing process.

Bubur Detox by Nutramedix. This is an herbal remedy that supports detoxification through the liver and is safe for children and adults. Use according to the directions on the bottle. Take twice daily scheduled. May also use every 15 minutes as needed for detoxification symptoms such as hyperactivity, sensory overload or irritability. Available at www.amazon.com.

 

Section on Essential Oils removed at Wombat's request

 

Organic Dandelion Root Tea. This is a safe and effective liver support. Traditional Medicinals and Alvita are nice organic brands. Available at most grocery stores and health food stores. You may use raw honey to sweeten it and server warm or cold throughout the day.

 

Complimentary Therapies. Supporting the body through the healing process is essential.

The following complimentary therapies can help with the healing process:

Massage, Acupuncture, Cranio-Sacral Therapy, Chiropractic Care, and Homeopathy.

Please contact our clinic for referral information if desired.

 

Colon Hydrotherapy. Colon Hydrotherapy is gentle way to cleanse the colon. A small amount of filtered, temperature controlled water flows gently into the colon, softening the waste and stimulating the colon’s natural muscle contractions or peristaltic action. The softened waste is naturally released. This process is repeated several times until the entire colon is cleansed. This is a safe, effective method of removing waste from the colon or large intestine. We typically refer our patients to Esther, Certified Colonic Hydrotherapist and Nutrition Counselor, at Holistic Health and Fitness. For more information and to schedule an appointment visit: http://www.holistichealthstl.com

 

Remember you may feel worse before you begin to feel better. Be patient and feed the body healthy, nourishing foods and filtered water!

[LNN]

Wombat - congratulations on getting tested!! That's a huge accomplishment! I hope it pays off for you.

 

In terms of herxing, there are really two separate issues. A true "herx" is a body's response to the neurotoxins that are released when certain bacteria die - a kind of chemical warfare the bacteria launches as a last ditch attempt to ward off threats. Lyme bacteria when it's in it's spirochette form can do this. For this true herx, you focus on helping the body remove the toxins - using things that support what's called the trans-sulfuration pathway - n-acyetl-cystiene (NAC), CoQ10, glutathione, or glutathione precursors. This is like the garbage truck in the body. http://www.huffingtonpost.com/dr-mark-hyman/glutathione-the-mother-of_b_530494.html

 

Then you add binders - bentonite clay, charcoal, chlorella - that will bind to toxins in the large intestine and help them be passed as a stool rather than be reabsorbed back into the blood stream. Binders need to be taken 2 hrs away from medications or probiotics or supplements. They bind to everything - not just bad stuff. So you don't want it binding to meds or nutrients.

 

Then there's the second issue - what's often called a herx, but is really more an inflammation issue. Whenever your body is waging war against an invader, it's going to produce inflammation as a way to call in certain T cells and as a way to make the terrain less friendly to the enemy. This makes you feel like crap and people often call it a herx. But that way to fight this type of response is with anti-inflammatories - steroids is the sledgehammer in this category. Ibuprofen and NSAIDS are gentler. Herbs are kinder still. Addressing inflammation can bring all sorts of physical and neurological relief. I highly, highly recommend the books by Stephen Buhner on using herbs instead of or in conjunction with pharmaceuticals. Most of the herbs he recommends fight inflammation in addition to being antibacterial and/or antiviral and antifungal. By far the two most helpful for my kids are Japanese Knotwood and Red Sage http://latitudes.org/dan-shen-become-important-treatment-pandaspans/

 

Buhner advocated for using herbs more so than antibiotics for a number of reasons but aside from germ resistance against antibiotics and what antibiotics do to the gut, he cites evidence that antibiotics tend to force Lyme into the "round form" or cyst form, which makes the bacteria almost impervious to antibiotics, whereas herbs don't seem to force Lyme into its cyst form, making it much easier to kill. He makes a compelling argument in his books and I've come to really share his views. But have found that while herbs are awesome for inflammation, we have needed antibiotics in addition to herbs to get the job done for Lyme. Still, I know some people who've had success with just herbs (Rowingmom being one).

 

Whether you use herbs or antibiotics or both, you definitely only want to introduce one thing at a time and wait a minimum of 4-7 days before adding a second or third element into your treatment plan. Otherwise, if you have a negative experience, you won't know what new thing caused the bad response and you have to stop everything and start all over. Both Buhner and Cowden (who has his own preferences of herbs and detox supplements) focus on inflammation and detox before you worry about killing bacteria. Inflammation can be as big a problem for symptoms as the infection itself. So while you wait for test results, you could start using some anti-inflammatory herbs to help the body feel better.

 

I'm sorry I can't give you a resource to get the herbs. The source I use in the US doesn't ship internationally. But there may be resources listed in the European edition of Buhner's books or you may be able to find local sources. But start with Buhner's Healing Lyme book and consider his book on Bartonella (since this co-infection is notorious for mental health issues). It may require more focus than you're able to give but maybe your family can assist.

 

Good luck!

Edited February 10, 2017 by llm

[Wombat140]

PLEASE READ

There's something I urgently need to ask you all before I can say anyhitng else. I have to ask you, when replying to my messages, please can you not use a particular word, at all? It's because my OCD reacts disastrously to seeing that particular word. I can't say it myself, but if you look at this link: http://disq.us/url?url=http%3A%2F%2Fthe-roleplaying-scientists.wikia.com%2Fwiki%2FHere_to_Stay%3Azca3iXPaUc0XwY9BSb818hkQbnY&cuid=4046483 , it's the sixth word on the T-shirt - just after "Elixir". I know that's a rather silly and convoluted way of getting the message across; that's OCD for you! (If you're wondering, the webpage relates to a very silly role-playing/story-telling site that I've fallen for!) And please don't say it in reply to this message! (Also, don't bother asking me why that particular word is a problem, because I don't know!)

Also, Ryan, would you mind editing your previous post, please, (just remove the whole of the bit about essential oils)? That way I can read my thread without ducking and diving. Please let me know when you have. Thanks.

 

 

 

I will post this on any more threads I post, too, just to be sure, I'm not relying on everyone on the forum seeing this one, that would be silly of me.

I'm sorry, I know that this is something you're absolutely not supposed to do, but after what happened last time, I really don't think it's safe for me to use this forum any more otherwise, and I really don't think we can manage to work out what to do if I can't use it; it's become absolutely indispensable to us. (No, my family can't do it for me, because reasons, take too long to explain.)

PLEASE don't reply by saying it deliberately in the name of exposure therapy. You have no idea how violent my reactions to that are - especially so if I've just asked the person not to. Or maybe you do have an idea, in which case I don't need to ask you; I was just frightened in case somebody did. Believe me, I run across it accidentally often enough, and it doesn't help and the results aren't pretty!

I almost forgot to say thanks people for the replies, they're helpful. Anyone else?

Edited February 10, 2017 by Wombat140

[Wombat140]

PS: In fact, LLM, could you remove the "calming inflammation" sentence in yours, too? It wouldn't wouldn't normally even be a problem, but I had such a catastrophic reaction to Ryan's posting that it's somehow got itself attached to, that particular example of it, got itself attached to he memory and is going off like a bomb every time I see it.

[Gpookie]

What on Earth? I am lost

[LNN]

Gpookie - Wombat is having an anxious reaction to a particular word used in Ryan's post and it triggered anxiety around similar word I used in my post. I've edited my post accordingly.

[Sheila]

Ryan's post has been edited also. I'll drop Wombat a note that the thread should be OK now.

[Wombat140]

Thank you all for being so understanding! Yes, I'll definitely put a note on any new hreads, I was thinking of doing that. And thanks Sheila for editing those posts.

 

What you say all makes a lot of sense. Don't know what I'd do without you! I've ordered the Buhner book too, you'd expect that to have something to say about it. I'll have something to discuss with my doctor now - hope he gets the point.

 

By the way, I tested positive for something!!!! Or sort of positive. Positive on one Lyme disease test (Elispot) and negative on the other (Western Blot, I think, haven't got the results sheet handy at the moment - I do remember it had ten bands and only one showed anything), positive on Coxsackie virus, negative on the others. I don't know... is that maybe just normal and what anyone would randomly have and has nothing to do with anything? :-( maybe not, I hope. Can anyone comment?

[LNN]

Don't put a lot of stock in the Western Blot. It's notoriously inaccurate. From what I've read, Elispot/iSpot seems more reliable. Here's something I wrote about Lyme testing that might be helpful -

Lyme Testing – All the Lyme tests that are available have flaws. There is no single test you can do to prove you do or don’t have Lyme. But the standard lab tests from labs like Quest Diagnostics or Labcorp are more flawed than Igenex, the lab used by most Lyme Literate doctors (LLMDs). There are two important differences that make Igenex more useful.

Western Blot lab tests for Lyme measure whether the body has made antibodies against certain antigens (invaders). When an antibody is made, it shows up as a dark band on the testing material. If a certain numbers of bands appear, you meet the CDC criteria for being diagnosed with Lyme Disease. But what if a band appears, but isn’t dark enough to qualify as positive? This is called an “Indeterminate” band – and it won’t be reported at all by most commercial labs. So if a weak or compromised immune system sees an antigen and produces antibodies, but not enough of them to turn a band “dark enough” to be called “positive,” then you might be told you don’t have Lyme. Igenex reports “indeterminate” bands, allowing a doctor to evaluate lab results in conjunction with clinical symptoms to decide if an “IND” band should be factored into a diagnosis.

The second reason Igenex is more informative is that it reports on whether Band 31 or Band 34 showed reactivity. Bands 31 and 34 are thought to be highly specific to Borrelia burgdorferi, the species most commonly tested for Lyme Disease. These bands are omitted by other labs because anyone who may have been vaccinated with LYMERix, a Lyme vaccine that was available between 1998 and 2002, could test as false positive. Rather than screen anyone who may have received the vaccine, most commercial labs omitted these two bands from their tests. But for anyone who never received this vaccine, bands 31 and 34 are highly suggestive for Lyme Disease. Igenex does report bands 31 and 34 and is therefore allows doctors to make better informed decisions on diagnosis and treatments.

So if you’ve only run a Lyme test from a local commercial lab and it came back as negative, realize it may not be as reliable as you were led to believe.

More detailed explanations can be found here:

https://www.lymedisease.org/wp-content/uploads/2014/08/Image13-link-pdf-brenner.pdf (note that this is from 1996, before the vaccine was available, but still one of the best explanations of the Western Blot for non-scientists.)

https://www.lymedisease.org/lyme-basics/lyme-disease/diagnosis/
(this article provides greater details and includes recommendations on labs in addition to Igenex)

* These links are old - before iSpot testing. So it's more to let you know why Western Blot isn't reliable than it is to promote any other test.

[LNN]

I think it's great that you've finally found some clues! You may need to find some European Lyme forums to get connected with doctors or with treatment protocols. Some of the advice I can give is limited by geography - such as not being able to suggest sources for herbs.

 

Coxsackie is a pretty common virus, especially in kids. But if it seems you're not able to get rid of it, that could be a result of your immune system fighting other infections and just being too tired/weak to fight the virus well enough to get rid of it. There are a few helpful antivirals that are available in health food stores in the US - l-lysine which is an amino acid, and monolaurin, which is derived from coconuts. I give my kids both, 3x/day, when they start to have cold symptoms. I recently tried one of Buhner's suggested herbs - Lomatium - and have been very impressed. But not sure if it's available to you.

 

I think you'll find the Buhner book very helpful. Once you've had a chance to read it, let me know if you have questions. He suggests a lot of different herbs, but you don't need to use all of them, or even any of them - the book's background on Lyme is helpful all by itself. But if you do decide to use herbs, then Rowingmom is an excellent resource and I've started using a number of his recommendations as well.

 

Have hope! The journey may be hard, but maybe you've finally found the right path!

[Plum99]

Wombat,

It is really helpful to me, as a parent with a child who doesn't verbalize what's going on in her head, to be able to read this. I really appreciate how open you are in sharing, and it helps me understand the type of thing that may be going through my child's head when a certain line from a song, or color, or word sends her into an episode that may last hours. Thank you