phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
New me again, oh so many questions..
Is chronic lyme fatal treated or untreated? I was dx with CFS now 10 yrs. later find out I have chronic lyme. How serious is this disase?
My symptoms are not so much pain but body aches, weird head feelings , sinus issues, mcs, vertigo anxiety/depression and fatigue.. I am mainly housebound.
I am to start a low dose of doxy as soon as I can get up the nerve.. Reason I react to so many abx..
posted
We have a thread for lyme obituaries. Read it and you will see that it can be fatal. However, not everyone dies, some get into a long remission and some hold their own with treatment.
You need to fear the disease more than the treatment. Read some of the threads and you will see that a number of people are trying non-antibiotic things. But I cannot vouch for them and think antibiotics are necessary.
Maybe you "react" to many antibiotics because you are killing off bacteria. That is a sign it is working. But your idea of starting off with low dose and ramping up is a good idea in these circumstances. Read what others have advised on the need to take during a meal, not lie down for an hour afterwards, take probiotics two hours after every antibiotic dose.
Also, go on low carb/no sugar diet to avoid yeast problems.
I just noticed after writing this that you have already gotten a lot of good advice on another thread you posted.
Posts: 8430 | From Not available | Registered: Oct 2000
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onbam
Unregistered
posted
It can be. We have no idea what the actual mortality rate is because the tests we've been given are bogus and nobody looks for it at autopsy (every autopsy at this point should include this.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: Is Lyme Fatal?
ANY of the tick borne infections certainly can be fatal - and have been for many. Mostly, that is for those who were not able to get treatment in time. But, yes, even with treatment and the best self-care, tick-borne infections can be fatal.
However, most who get treatment, and employ the very best support and self-care measures they can, do survive. Many get better, even after years of illness.
While it is important to understand the potential severity, it is also important not to let that frighten us. If we do the best we can for ourselves, we have a better chance. We have to take as much control as possible and put our positive energies in but also just be aware that we can't always steer the boat.
Q: Can lyme be treated with natural abx.or natural supplements?
Not usually alone. Even most LL NDs (naturopathic doctors) often use antibiotics along with support methods during some parts of the treatment process.
Topic: How to find an ILADS-educated LL ND (naturopathic doctor), L.Ac. (acupuncturist), etc.
Includes how to find an ILADS-educated LL ND, a L.Ac. (Acupuncturist), a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc. DO, DC
Includes many articles and books on complementary / integrative methods - & RIFE links.
BODY WORK links are also included. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
UNDER OUR SKIN - in the documentary and in the bonus footage produced some time after the initial filming, we walk along with some dear people who do not survive yet still inspire us with their strength and courage. We also see many others who manage to overcome lyme on various levels.
SUCCESS STORIES -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One way lyme - or any chronic infection - can be fatal is from a certain kind of liver toxicity and the inability to process out elevated porphyrins which can cause cell death if their numbers get higher than our livers can process.
Read first, the post on "Secondary Porphyria" - and then be sure you know how to counteract elevated porphyrins as everyone should be aware of that even if they may not have a genetic kind of porphyria.
Beta Carotene is your best friend.
While many suggest a low-carb diet, too low can actually be fatal for some who have any kind of porphyria. It's more low to moderate on the glycemic index. We can still be smart about the kinds of foods we eat and if we get lots of complex carbs that are high in beta carotene, that will serve us well. --------------------
PORPHYRIA -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For many of us, at many stages we may feel as if we are dying. Some of that is just the way lyme and other TBD (tick-borne disease) - &/or other chronic stealth infections work.
It helps to understand the "Herx" process and what we can do about it. ----------------------
------------- "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:
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
=============================
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.
* For Herxheimer reactions: 2 Alka-Selzer Gold (no aluminum) in 8 ounces of water with lemon or lime followed by 6-8 capsules of glutathione or 1500 mg or oral liposomal glutathione. 70% will fell better in hours
* On the topic of water: Dilution is the solution to pollution. This suggests that in order to help our bodies detoxify, we must drink more water"
---end of notes from conference----
Alka Seltzer Gold is VERY hard to find in stores. I have seen posts about it on this site. My LLMD thought they had made a mistake in the conference and bought Alka Seltzer **cold** because she did not think Alka Seltzer **GOLD** existed after not being able to find it!!!
***I got a box from Amazon.com
(momlyme) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Now, after all that, I back up and see that you say:
"I am to start a low dose of doxy as soon as I can get up the nerve" (end quote)
You have the diagnosis, you just saw a doctor (but I'm not sure he is an LLMD) and you have the prescription.
If you saw a good LLMD, you should have been given instruction in support methods. Get your support methods in place and start treatment.
The longer lyme goes untreated, the harder it is to treat.
Do not be frightened by herx stories, just be informed and armed so you can be proactive and know what to expect. The harshness of treatment is nothing compared to what untreated lyme can do, really. And, with support methods, you will be in better shape.
As others have said in your other current threads: the only way out it through.
I thought I saw where you said you may wait to start after the holidays. If you just were hit by a car, would you wait to go to the E.R.?
Get your support, plan diet changes, and start treatment as soon as you can. It really matters. There is no point in waiting as, either way, your holidays will be altered. You may as well be doing something now to be sure you will see NEXT year's festivities even if you have to miss some of this year's. -
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I don't think that many ppl die from LD. A few do; but some ppl die from other things and some just assume it was from lyme if that person happen to have had LD at some point.
In my opinion......."life is fatal". We all are going to die from something.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
A 15 year old has died in central Sweden after doctors missed that he had been infected by the Lyme disease bacteria for years.
The boy had long suffered from pain, but had always been sent home from medical centres with just some painkillers, despite telling medical staff that he spent a lot of time in the forests and had often been bitten by ticks, according to local Swedish Radio news. He then developed inflammation of the brain and died.
The bacteria that cause Lyme disease are spread by ticks that live in many Swedish forests.
. . . Over time, as the untreated LD percolates, symptoms accrue to the burgeoning clinical picture until a multisystem presentation is created. . . .
. . . . A sudden acceleration of encephalopathy . . .
. . . Lyme hepatitis occurs in approximately 15-20% of patients. . . .
. . . Another hazard attending palliative steroid use is that some symptoms will be concealed, rendering the clinical picture less interpretable. . . . [one lyme patient] succumbed to fatal cardiomyopathy after receiving steroids. . . .
. . . the disproportionate way in which cardiac complications dominated the clinical course relative to the other LD symptoms . . .
. . . Sudden death can also result from arrythmias. . . .
. . . differentiating Lyme cardiomyopathy from a mere exacerbation of cardiomyopathy (due to other causes) by LD remains an unresolved issue. . . . -
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not to frighten, but to stress the importance of good care (and the need to avoid steroids). -
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