phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
After 9 years of being dx with cfs/fm I finally got a dx of chronic lyme. Now the doc wants to start me on doxy..
I have had so many bad reactions to abx and other med I am afraid to take any meds. Anyone have what I call med phobia and if so how did you handle it.
You would think I would be jumping with joy to find a dx and possible cure. What in the heck is wrong with me?
HEALING LYME DISEASE: An Integrated Approach to Curing Chronic Infection by DKr, M.D. (2004)
================================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
Topic: Goldmine of information --- support suggestions from Dr. K -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Backing up, first, WELCOME. Yes, your post is just fine and your reaction is what I faced after so many years on and off of abx that helped in someways but tore up my stomach and caused candida.
First of all, I'm very tired now so will make a few note and try to come back and clarify.
1. Prevent candida as best you can.
OLE - I suggest taking Olive Leaf Extract before you even start the doxy.
3. Diet needs to be as close to the earth as possible, so to speak. Good lean proteins, good fats (nuts, wild salmon), LOTS of vegetables and non-gluten whole grains. Search: QUINOA for a start.
4. In addition to your LLMD, you might want to seek out a LL ND for the adjunct care:
Topic: How to find an ILADS-educated LL ND (naturopathic doctor), L.Ac. (acupuncturist), etc.
Books and articles on complementary methods are included - and also those on RIFE machines. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Armed with information, it is possible to lessen a herx reaction. Still, no protocol is a walk in the park but treating lyme is far better than not treating it. Support methods can help.
------------- "Herx 101" (my attempt at making sense of it) -------------
Lyme is caused by the gram-negative bacteria, BORRELIA b. - that is what is known as a SPIROCHETE, a cork-screw shaped bacteria that can sort of spring where ever it wants, not needed the blood stream for transport.
Spirochetes are particularly rough bacteria and they can take many forms to evade detection and resist treatment.
When spirochetes get irritated they emit toxins. To begin with, Borrelia b. is a very toxic infection. But irritate it and it spews forth even more toxic junk into our bodies.
So, our bodies are loaded with toxins and our liver and kidneys are overwhelmed. One reason why LIVER SUPPORT is vital to treatment.
To spirochetes, irritation to them can be nearly anything. It can be strong medicine, too much activity, too much heat, too much noise or light, etc.
That is why lyme patients feel so awful so much of the time. Even a little vibration will irritate spirochetes. Too much heat, too much movement.
Still the herxheimer reaction - from "chemical assault" (even if from a strong herb) - is very real. ---------------
The Herxheimer reaction (also known as Jarisch-Herxheimer or Herx) occurs when large quantities of toxins are released into the body as bacteria (typically Spirochetal bacteria) die, due to antibiotic treatment or rapid detoxification.
Typically the death of these bacteria and the associated release of endotoxins occurs faster than the body can remove the toxins via the natural detoxification process performed by the kidneys and liver.
It is manifested by fever, chills, headache, myalgia (muscle pain), and exacerbation of skin lesions.
Duration in syphilis is normally only a few hours but ** can be much longer, up to months or years, for other diseases, especially Lyme Disease. **
The intensity of the reaction reflects the intensity of inflammation present.
The Herxheimer reaction has shown an increase in inflammatory cytokines during the period of exacerbation, including tumor necrosis factor alpha, interleukin-6 and interleukin-8.[1][2]
The reaction is also seen in other diseases, such as borreliosis (Lyme disease[3][4] and tick-borne relapsing fever[5]), bartonellosis, brucellosis, typhoid fever, Myalgic Encephalomyelitis, and trichinellosis, Q fever, and cat scratch disease.[6][7]
Especially note herxheimer abtracts with Leptospirosis, another spirochetal infection.
=======================
A "herx" can also be connected to liver stress, in general. But it may not always be, technically, a herx.
Often, we call just feeling horribly icky a herx. Lyme - and lyme treatment - can be a rough ride. Not all of that is a herx and sometimes the term is overused but, in the end, liver support often helps make treatment easier and safer.
If the liver is overwhelmed, and then asked to outperform - handling too many chemicals or faced with too much exercise - it can't process out the toxins and there is a backwash, so to speak. Technically, that may not be called a herx (or it may be) but it's a toxic reaction, all the same.
More specifically, a "herx" can also be connected to porphyria, just one kind of liver stress resulting in a toxic level of elevated porphyrins. There are at least eleven kinds. More about how at least one kind is seen frequently with lyme patients:
FOUNDATIONAL PROTOCOL for AUTISTIC SPECTRUM DISORDERS
pages that relate to either a herx or support enough for the body to help manage a herx:
p. 3: mitochondrial dysfunction
p. 28; p. 30 Detox
computers offgas (two notes on cadmium: traffic and even organic grains)
p. 32 Detox: reducing toxic burden from vaccine adjuvants (also has a broader application)
* Never give Tylenol [acetaminophen] . . . (it reduces glutathione production and makes thimerosal more difficult to clear from the body) . . .
p. 36 & 37 - Rehydration Cocktail recipe
p. 38 - 39 Electrolyte recipes
p. 40 Magnesium
p. 68 Exit Routes (Kidneys; Liver/Gallbladder; Skin; Colon)
p. 69 Starts Toxin Elimination
p. 76 Supporting the Kidneys
p. 77 Liver support
p. 78 Natural Anti-inflammatories
p. 80 - 82 General Detox Support
p. 100 Lyme disease
p. 113 Minerals needed
** p. 124 - 127 Herx Support -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I suggested OLE to help prevent systemic yeast (candida) infection that can occur from antibiotic use.
OLE, in my opinion, is a supplement. I would not rely on it as a sole agent. In my case, after many years on and off of abx (antibiotics) and horrible candida . . . after that was cleared and I had to start on doxy, by taking OLE first and all through, I had no problem at all with candida.
Of course, all simple carbohydrates have to be avoided but that is just common sense now for every living person. Complex carbs are best. No simple ones.
OLE would be in addition to probiotics. Again - Rx, supplements, and probiotics - each need to be taken separately.
-------------- An Olive Leaf formula (that contains Terminalia chebula):
My ND (naturopathic doctor) recommended MYROLEA B. Most naturopathic doctors and acupuncturists know about the Seven Forest formulas. As this is a combination formula, there are ingredients included to help the body with "clearing heat" and metabolizing toxins.
Myrolea-B (White Tiger) is a simple formulation of highly concentrated extracts from four Chinese herbs and one Western herb.
The Chinese herbs include forsythia and lonicera, two of the key ingredients of Ilex 15 (and the main antiviral ingredients of Yin Qiao Jie Du Pian), thus boosting the dosage of these essential ingredients.
Myrolea-B also contains the antiviral agents scute (huangqin) and terminalia (hezi). The Western herb in this formulation is olive leaf, which is one of the primary anti-viral herbs derived from the European tradition.
SHUANGHUANGLIAN: Potent Anti-Infection Combination of Lonicera, Forsythia, and Scute - by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine - 2003
Shuanghuanglian (SHL for short) is a modern formula that was devised in the 1960s to treat a variety of infections. It is comprised of the alcohol-water extracts of three herbs: lonicera (shuanghua, often called jinyinhua), scute (huangqin), and forsythia (lianqiao). . . .
. . . One of the early preparations of the SHL was a tablet made of equal proportions of the extracts of each herb. This was used to treat leptospirosis, a disorder caused by a spirochete bacteria, related to the organism that causes Lyme disease.
Leptospirosis causes initial symptoms of fever and chills, headache, and muscle ache (especially in the shoulders); these are consistent with "flu-like" symptoms described for the onset of many acute infections.
In a 1971 report, the formula was described as being made in 500 mg tablets derived from 3.7 grams of the crude herbs, and being administered in doses of 10-15 tablets (thus, equivalent to the extract of 37-55 grams of herbs) every 6 hours (1), a very high dosage.
. . . Recently, Shuanghuanglian has been applied successfully to treatment of Coxsackie B3,
. . . The general indications for SHL . . . are "relieving the exterior syndrome, clearing away heat and toxic material," and its indications are "treatment of fever, cough, and sore throat that arise from wind-heat syndrome."
It is said to have "a good action in treating upper respiratory tract infection, tonsillitis, laryngopharyngitis, pneumonia, acute enteritis, viral dysentery, etc., when caused by virus or bacterial infection."
- full article at link above.
===================
Detail from two of the most reputable sources of OLE:
Die-off effects -- Olive leaf use causes the death of microbes. The liver, kidneys, intestines and skin are therefore tested to their limits, to deal with, and remove them. This causes Herxheimers Reaction, which can have a variety of symptoms, but basically makes one feel ill or under the weather due to a treatment's effect upon the body.
Thus, "die-off," referred to in medicine as the "HERXHEIMER reaction," occurs when the olive leaf components kills large numbers of harmful germs rather quickly. Then, the patient's membranes absorb toxic products from these dead microorganisms. . . .
See details at link for:
* Safety Precautions and * Known Drug Interactions
SEAGATE Olive Leaf Extract - also see their menu for all their OLE products, including nasal spray, personal spray, etc.
Excerpt:
Side Effects:
Olive leaves have been used safely for thousands of years. The only known side-effect is the possibility of a HERXHEIMER reaction, an allergic response caused by the rapid die-off of fungi that release toxins which may temporarily cause a brief allergic reaction, lasting for several days.
. . . Are there any contraindications with Olive Leaf Extract?
No contraindications with other drugs have been observed.
** However, Olive Leaf Extract should not be taken with antibiotics produced from yeast / fungus or along with additional amino acids other than those received in your everyday foods. They might cross out each other's effectiveness. . . .
- Full article at link above.
===================================
PROBIOTICS still need to be taken. Take several hours away from OLE (and from all supplements and also from Rx). OLE will negate probiotics if taken too closely together. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Be sure to take doxy with food and it's best to take it in the middle of a meal.
Also, do not lie down for at LEAST one hour after taking it.
We hope you will find the courage to get well!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks to each of you who replied.. I am new and confused, at this time I do not have a LLMD just my regular doctor.
Your info has been helpful and had made me realize I need a LLMD but not sure how to find one. I will talk to my doc. The med he put me on is doxy .Oh, what to do.??
Oh, on my western blot my 41kd was reactive I think the IgG and the Igm the 23 kd was reactive all others negative..
My anxiety is so high I am thinking of waiting until after the holidays to start anything.. Thank each of you so much as I need to vent and direction ..
Posts: 1058 | From VA | Registered: Oct 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
phyl6648
Everything seems overwhelming right now, and that's totally normal. Just give yourself a little time to digest everything.
It takes lots of self-study when you have this disease. There is not one cure for all, unfortunately.
Good luck and welcome to the boards! This is a good place to be.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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