posted
I am cross posting this from another forum as I think this might be something others are experiencing and I could really use some input...
Here's one to wrap yer brain around...
I did a stint of abx. Doxy, 200mg BID. Went off due to GI issues and severe photosensitivity. Started an herbal program, and continued to take the mountains of supplements I had been taking.
I have slowly been going downhill since the end of December.
Its not a herx, its not detoxing....I have been detoxing religiously all along...detox baths, chlorella, green smoothies, lots of water, gluten/dairy free diet, vegan, coffee enemas, etc etc....
I got to the point where I felt completey beat down and Hubby said maybe I am doing to much. So I started going off things to see if I felt better. No more herbs. No more supplements. No more detoxing stuff. Yet I still feel like crap...and I think I am detoxing from all the detoxing I was doing!
I started thinking that I am taking all this stuff, most of us here, to try and combat, rebuild, etc. Religiously detoxing so I don't 'reabsorb' any toxins. Yet my faulty system simply cannot handle it.
It started a week ago with vomitting. ONLY at night, usually only once. Headache, weakness, stomach grumbling, full body swelling...one night my throat swelled up like an allergic reaction to ??? that took 3 doses of Benadryl to deal with. I am having an ulcer-like pain in my stomach that comes and goes, and pain that is in my kidney area...
Went to see my wonderful(but not LLMD) Nurse Practitioner who ordered all sorts of bloodwork...thyroid panel(I have Hashi's) Hep panel, various myalgia, etc screens...she hears me when I say nobody knows WHAT this is but clearly its something and I am OVER IT. She knows my Immunologist thinks it is 'acting' like Lyme...but I do not have a pos. test...
So, all that mumbo-jumbo to simply say...I wonder if some of us who are doing EVERYTHING and reacting to who-knows-what, are starting to react to detoxing? Because I am officialy on NOTHING except my thyroid med and I would have sworn I am detoxing...
Anybody want to take a stab at this?
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I can't say for sure without knowing a lot more about your history but my guess based on what you've said is that you still have active lyme and or co-infections that are not being treated. A negative test does not mean much. Lyme is a clinical diagnosis.
From a previous post of mine _________________________________________________
There are many people with negative tests, including the IgeneX WB who actually have lyme disease. We know this for many reasons but one is because a person can be seronegative (negative blood tests) but have other test results that show the DNA of the spirochete in their body. This is why lyme is a clinical diagnosis. There are NO reliable tests for lyme disease.
From the Lyme Disease Foundation and the Lyme Alliance
Compiled by Melissa Kaplan 2003
-------------------------------------------------------------------------------- Nine Reasons for False Negative Lyme Disease Blood Test Results
From the Lyme Disease Foundation brochure, Frequently Asked Questions About Lyme Disease
1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.
2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.
3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.
4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.
For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.
5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.
6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.
7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).
Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.
8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.
9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.
The majority of laboratories, including state and county public health laboratories, use the CDC epidemiological criteria for reporting Bb Western Blot IgM and IgG test results.
Some of these labs may automatically insert a statement to physicians similar to the following one included by the Sonoma County Department of Health Services Public Health Laboratory:
The diagnosis of Lyme disease must include careful clinical evaluation and should not be based only on the detection of antibodies to Borrelia burgdorferi.
Unfortunately, however, most physicians do use these tests as definitively diagnostic, rather than making a clinical diagnosis based on patient symptomology and response to the various antimicrobial protocols used to treat Lyme and common tickborne co-infections.
http://www.dhss.mo.gov/TicksCarryDisease/LDPositionPaper.html Barbara Johnson CDC Currently, serology tests are poorly standardized and physicians must interpret them with caution. They are insensitive during the first several weeks of infection and may remain negative in people treated early with antibiotics.�
If I were you, I would get a good ILADS LLMD and follow their instructions.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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lululymemom
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Member # 26405
posted
How long were you on the Doxy? I can only tell you what happened with our experience. After 7 months of abx my daughter was forced to discontinue due to toxicity. She had to stop everything including supplements.
For the first 2 months many of her symptoms including POTS came back intermittently. She would still drink all of detox remedies(lemon water, ginger tea). She had definite signs of detoxing when she went off.. Skin started breaking out, even though enzymes came down, she started getting liver pain, among other symptoms.. We felt this was a necessary process to her healing.
After a month and a half she started improving and she told me even though she went through some intermittent discomfort, she felt way better than when she was treating with abx. She is now back on a herbal protocol and doing quite well.
If you were only on the Doxy a short time, you may still have a heavy bacterial load that wasn't addressed adequately.. in that case you may want to go back on a different abx..
We learned the hard way that even herbal protocols can put stress on the liver and other organs and sometimes the body needs a well deserved break from everything. When re-introducing herbs, it important to pay careful attention to how you respond to each herb. I find this the next best thing to energy testing.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Unless you are a very "scientific" vegan, detoxing anything, metals, chemicals, neurotoxins of any sort is difficult without a balanced protein intake. If you are allergic/i.e. your body cannot regulate the neurotoxins, it is even more problematic. You may want to took into this and also read up on the Allergie Immun Germany thread that is running here.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
During my recent tx, I began feeling really toxic and overloaded so I took a month long abx break. Focused on detox, detox, detox-from lyme neurotoxins to yeast to metals etc.
The more detox supp.'s I took the sicker I got. I am sort of the all or nothing kind of gal. So for the entire month off of abx.'s and on detox supp.s I felt so sick. I decided to stop all supp.s and just went back on abx.s
I slowly felt better and then started on the detox supp.'s again - got feeling sick so stopped them again.
Now, I am just trying to detox without supp.'s. Through a clean and healthy diet, lots of water, exercise and sweat, meditation etc.
I think the detox supp.s were too tough for me to handle and my body responds to a more organic and gentle approach.
I also MUST take abx. breaks every 6-8 weeks to allow my body to sort of catch up with the die off of ketes.
I can tell when I am overloaded and at that time I take a break for anywhere from 1 to 2 weeks. It works for me - a more gentle approach.
I have been sick since 2004 and re-started "serious" treatment again the end of 2009, so I am slowly chipping away at the layers of this lyme onion.
I am finding that I need to be very much in tune with my body and it's needs - requiring a great degree of flexability in the tx plan.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Sounds to me like you have under-treated Lyme. Meaning - you did not eradicate the infection.
And/or active co-infections.
See Terry's post above...
You might consider finding an LLMD, if possible.
Good luck, and feel better!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Thank you Terry! Unfortunately, I cannot afford to pay out of pocket for a LLMD and the only ones around me are cash only.
I was on Doxy 5 years ago for a month and had to go off due to severe photosensitivity that caused a nerve reaction. That was followed by 30 days of augmentin then several years of herbal protocols.
I took an antiviral for about 6mo, maybe 2 years ago? trying to deal with various other viral issues.
Took 4mo of doxy ending in Dec. due to stomach issues and again, the severe photosensitivity. I was also on Cat's Claw, andrographis, Artemesium, and Olive Leaf, along with at least 10 other supplements. Though I stopped the doxy, I did not stop the herbs until about 2 weeks ago. I REALLY do not want to go back on the antibiotics...I just feel like the risks far outweigh the benefits as far as what effects long-term abx useage does to one's system.
Gigi, I am not familiar with a 'scientific' vegan...I eat a very clean diet, when I can eat that is...
desertwind, you sound like me. If abx are good and herbs are good...then together they are great, right? If 2 pills are good then 4 pills are better! lol, I am learning that less IS sometimes more. Do you feel functional on the path you are on now? That is what I am wanting, really, is to at least be functional. I have 3 young children and we homeschool and I can barely get through that...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
rvr; To answer the question of whether I feel functional or not...well..
If you would have asked me 3 days ago I would have said YES!
Over the past week I was well enough to run 20 miles and a few days of days of hiking. I was feeling as if I had made it to some healing "ah ha moment".
But this past Sunday I upped my Doxy from 300mg.s a day to 400 mg.s and boom, here I am today feeling sooo sick. All herxing and neuro and major headache etc...
It is a rollarcoaster ride - I use to have good and bad days but now I can feel much better for a much longer stretches of time. I can feel good/almost normal for a few weeks at a time. May not seem all that great but when you start with only being able to lay in bed all day it most certainly is a small victory.
So I guess looking back from where I started and how long I let this infection get out of control, I would have to say that I am on my way to a more functional way of life.
I think you are right! For some people less is better and I am one of those who need to go very gently.
Any chance you could try a different abx. and maybe pulse it? I have done pulse therapy when my system felt over-loaded and my husband is doing it now. I think he is doing 4 days on /3 days off. He is having pretty good results and his immune system seems to be waking up in the process.
I hope you can find some answers and get your life back on track - such a terrible thing to have to struggle with when you have 3 young ones at home. Best to you.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
thank you desertwind Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
desertwind, have you tried detox baths with hydrogen peroxide and epsom salt? I would say this has been one of the most effective detox methods I've used since I began lyme treatment. I also do coffee enemas which have helped me quite a bit as well.
desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
gwb; I have never tried the hydro./e.s baths.
Maybe I will give it a try since I need to get rid of some of these dead kete toxins floating around..Thanks for the tip.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
desertwind, I highly recommend them. For my wife and I the detox baths have been our saving grace. For us, they're gentle and I always feel calm and relaxed afterwards.
There's a recipe for it on this forum that my wife posted. If you need help finding it let me know and I'll post the link. If it's your first time then you may want to cut the dosage of the salt and hydrogen peroxide in half just to make sure you don't have a reaction to it.
Most people don't, but a small percentage do. Some say they herx or get a bit hyper afterwards, but that's never happened to my wife and me. Everyone is different.
Gigi, I am not familiar with a 'scientific' vegan...I eat a very clean diet, when I can eat that is...
Inadequate protein intakes is very bad for chronic disease. Many with chronic disease actually need higher than average protein. Heavy metals and other toxins can be impossible to detox if you aren't getting the right kinds of protein.
So, if you're vegan and your not calculating your protein intake, you may be getting an inadequate amount. I needed MUCH more protein when I was sick. I ate meat daily AND whey protein TWICE a day.
I eat a mostly vegetarian diet naturally (not intentionally) with meat only a couple times per week, most of my protein coming from dairy and eggs. I juice, etc. It was quite a change for me to add all that protein.
Whey protein is a glutathione precursor and easily digested. You might consider adding it to your diet to see how you feel.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
GWB I am 100% with you on the baths! They are my saving grace some days! I use 3c epsom salt to 2c H2O2 in a bath as hot as I can stand it, with the heat cranked up in the bathroom Oh, bliss...Coffee enemas are a bonus as well.
6goofy...thanks for the explanation I will look into the whey protien. I do not feel instinctually that I am protien deficient, but I also go days without eating much...um, hard to get enough of ANYTHING when you are doing that! I simply could not eat meat/fish, as it is a moral/spiritual decision for me and I can't digest dairy. We raise chickens for eggs, though I have trouble eating them...
I know I have seen whey at the HFS so I will check it out when I am there next.
I ended up seeing my Immunologist and he put me back on mega-abx. I did NOT want to do that but I do agree with him that I was on a downward spiral that wasn't going to end well. So, now I am back to square one and I will focus on strengthening my immune system and not over-doing it with all the other *stuff*...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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