After 13 years and many hospital stays I was finally correctly diagnosed with Lyme. I had Bells palsy at first and the Dr. did an Elise test that came back neg. of course. Since then I have had repeated hospitalizations of left side paralysis for days.
All drs. agreed it was in my head. I eventually began to think it was in my head. My bones are painful.I've had 13 surgeries in 13 years. Most, when looking back can be related to the Lyme.
Now that I am being treated I "herxed" at the end of week 1 and 5 and wanted to just die during that time. However I'm in week 7 of treatment and I am experiencing a renewal of all my symptoms from past years such as facial numbness and numbness of my skin on left limbs.
I can still use them but its creepy. The worst is the crawling feeling in my head. My skin and scalp are painful to even touch. I have lost a great deal of my vision for distance in a 3 week period which drs. don't seem to be concerned over.
I have bladder retention problems that the uroligist has me waiting for 6 weeks to get it tested. Stomach and intestinal pains. Stiff neck and ear pain. Also my hips and everywhere I have had surgery on my shoulders, elbow even my lower back have arthritus and are painful to touch or lay on. My rib cage pain has even escalated.
I am wondering if it is better to live with the Lyme and not get treatment than go through the exasperating symptoms all over again? This is only a few of my issues resulting from the Lyme. I seem to be more content in my mind knowing there is a reason for the issues now rather than think it was all "in my head or from stress.
" Have any of you considered just living with the side effects of Lyme rather than the physical after effects you deal with during treatment?
Don't get me wrong I want to be well but the side effects and the onset of previous symptoms that had subsided are very difficult to deal with over again, physically and emotionally. With all the medicine and suppliments I do not see an improvement.
I do see many of you still suffering with the same issues yet not much relief. I am sure this is me feeling like the problem is just to big to tackle right now. I need to see a glimmer of hope and improvement to keep me going. Please any suggestions. I'm antsy right about now.
** broke up text for easier reading **
[ 10-01-2011, 03:58 PM: Message edited by: sixgoofykids ]
Posted by Lymetoo (Member # 743) on :
Treatment is rough .. but worth it. The big block of print was hard to read, but I think I figured out that you've only been in treatment for 7 wks??
Keep going! Ask your LLMD if you can back off the meds when the going gets too difficult.
Which meds are you on?
I think going thru the treatment is far better than having 13 surgeries in 13 yrs.
Be sure you're on high quality probiotics!!
Posted by sixgoofykids (Member # 11141) on :
It's a hard call to make. I went for an alternative treatmeng in Germany using the Bionic 880, which does not exacerbate symptoms to get rid of them. I tired of using antibiotics and having the ups and downs from them for almost two years.
Posted by JAC (Member # 34240) on :
Probiotics are from Natures Sunshine. I thought I was well educated on this subject until reading your posts. There is so much to know. It is a bit overwhelming right now. Drugs, suppliments, diet... sleep, which I have done a turn around on lately. First all I did was sleep now I can't. UGH! One thing after another.
**edited dosages.. please do not share dosages on the public board. You may share thru PMs.**
[ 10-01-2011, 05:20 PM: Message edited by: Lymetoo ]
Posted by Dave6002 (Member # 9064) on :
JAM, I feel your pains, because I have the pains you described although in less intensity.
I posted hand-foot syndrome resulted from cancer chemotherapy, in which drugs are leaked into the tissues and cause pains and inflammation. This similarity to my pains prompted me to think that our pains are caused by either toxins released by the pathogens or poor circulation. So detoxin and improve circulation may relief the pains. The systemic nature of the pains suggests that the problem is in the blood. I tend to think it's the malfunction of the red blood cells that cause the pains.
Posted by JAC (Member # 34240) on :
Dave Detoxin? Isn't that a bit to late since I already started abx.? There are so many types of detox that it is unnerving to even decide. Your thoughts on this?
Posted by scorpiogirl (Member # 31907) on :
Hi there,
I'm sorry that you're suffering and that's actually a great question.
If my symptoms weren't so debilitating (brain lesions, peripheral neuropathy, unrelenting full body pain, headaches, swollen joints, vertigo, dizziness, nausea, insomnia, rash, the list goes on and on... I wouldn't treat either! But when Lyme and companies interfere w/ your life to the point where you can't leave the house then yes you have to treat. I am living half dead.
What makes it even harder to decide is even if you suffer all the Herxes and side effects there is still not guarantee that at the end the treatment is successful. Posted by TF (Member # 14183) on :
People who really, really suffer a lot during antibiotic therapy are often those who cannot detoxify.
It is important to detoxify while taking meds. If you can't get rid of the toxins naturally (like most of us can), then the treatment can really be a nightmare.
There is a genetic test to find out if a person has the gene that makes them unable to detoxify. Here is an article that discusses it:
I had lyme disease for 10 years before I was diagnosed. My first herx lasted a week. It was 4 days of feeling bad and 3 days of feeling half bad. It was definitely well worth the sick feeling to get rid of lyme, babesia, and bartonella. It is now 6 1/2 years since I completed my treatment and I am still symptom free, enjoying my life.
All I did for detox was drink lemon water and take a few epsom salts baths. My lyme doc said to eat 4 lemons per day to detox. He said lemons are God's natural cleansers of the body, and that I was also to drink a lot of water. I squeezed the lemons into the water. That was my only drink during my treatment. That's all I needed for detox.
But, if you are being tortured so much, you will need help detoxing. And, you may have to go slower with your treatment. See page 13 of Burrascano for a small discussion of using binders to get rid of toxins:
Other ways are FIR sauna, dry skin brushing, massage, etc.
If you have the detox problem, you really need a doc who understands this problem and can help you with it. Otherwise, you may be nothing but sick during your entire treatment, and few can tolerate that.
Posted by scorpiogirl (Member # 31907) on :
I have that dreaded genotype so my body doesn't detox well.
Knowing this going into my treatment I'm diligent about detoxing and having my lab work done weekly to monitor my organs, and for the most part I do ok. But it by no means got rid of the Herx or the "toxic" feeling I am experiencing.
I just feel that no matter how good you are at detoxing, there is only so much you can do. Plus it is NOT natural for us to be taking so much drugs for such a prolonged period of time either!
Detox that I'm doing:
Castor oil packs Dry Brushing Empsom Salt baths Lemon water (had to stop b/c I was messing up my teeth!) Milk Thistle Cholestyramine B 12 injections Rebounding (when my leg pains are not too bad)
Posted by Dave6002 (Member # 9064) on :
JAM,JAC? Oh, it seems I was worse than you lol.
A lot of friends here like TF are better than me to answer you question.
For detoxing, I used Chlorella. Cilantro is another one. The following is from Lymebytes' blog:
Monday, March 31, 2008 Chelorex for Heavy Metal Chelation
Wouldn't it be delightful if there were an all-natural heavy metal detoxification product capable of penetrating ALL areas of the body? I mean, we have chlorella, which binds metals, but isn't so great at mobilizing them. It can't reach intracellular metals, neither can it cross the blood-brain barrier. Then there's cilantro, which is a super-star metal mobilizer, but poor binder. It can move metals out of the brain and CNS but then it just sort of leaves 'em out there, with nowhere to go but another area of the body. (Oh dear!). DMSA and DMPS can chelate metals effectively, but these are synthetic products that are hard on the body and which have side effects. Since we are bombarded daily by heavy metals, we really need a product that we can take long-term, without these problems.
Oh wait, but there is a product! I had forgotten about it up until now. And the great news about it is that it contains lots of amazing stuff to assist the body with heavy metal chelation. It's name is Chelorex, and in addition to cilantro and chlorella, it contains alpha-lipoic acid, the only other heavy metal mobilizer found in nature, besides cilantro, that is capable of penetrating the blood-brain barrier. These three items, when taken together, effectively mobilize, bind and excrete metals from all areas of the body.
But just to make sure, the makers of Chelorex added other ingredients to assist cilantro, chlorella and alpha-lipoic acid with the mobilize-bind-excretion process. These include: magnesium, selenium, and zinc, which enhance detox reactions and reduce the toxicity of metals; vitamin C, which promotes the excretion of metals; taurine, which enhances biliary excretion, protects the CNS and blood cells from metal damage; MSM, which increases cell wall permeability so that treatments can penetrate cells; L-glutamine, which restores and preserves gastro-intestinal function, as it contributes to the production of glutathione, and NAC (N-acetyl-cysteine), which increases glutathione and aids in chelation. Glutathione is important for chelation because it helps the liver to process toxins; it also binds metals and mops up free radicals caused by these, as do many of the above. All of these substances, when taken together, render heavy metal detoxification more efficient, while protecting the body from damage done by metals.
Chelorex has been tested at length on at least 150 people, with excellent results. That said, one of the methods used to evaluate metal levels in the individuals was hair analysis; and while hair analysis is thought to be one of the most effective ways to measure heavy metals in the body, it is yet fallible. It cannot measure metal levels deep in the body's tissues, and hence, the reliability of these results may be questionable. Urine and feces tests were also undertaken, and test subjects demonstrated a significant reduction in metal levels, but these tests also have their limitations. Further, the makers of Chelorex, Sciene Formulas, www.scienceformulas.com, suggest that a significant portion of a person's overall body burden of metals can be removed in just 90 doses. While they do not explicitly state that 90 doses is sufficient for everyone, I have to wonder if 90 doses is sufficient for anyone? While I would like to think that this could be, I have been performing heavy metal chelation using chlorella and cilantro for several years, and my heavy metal levels are yet high. In addition, one of my healthcare practitioners who trained under LLMD Dietrich Klinghardt believes that heavy metal chelation takes years, not months.
Yet, it is noteworthy that Science Formulas has taken the trouble to extensively test its product and has achieved some possibly remarkable outcomes, notwithstanding the limitations of its testing. Also, the contents of Chelorex lend stong credibility to its effectiveness. It is well-known that cilantro, chlorella and alpha-lipoic acid are extremely effective when taken together, and what a great convenience that these can now be purchased together in one product! At approximately 80$ per month (give or take ten bucks, depending upon your weight!) for an intensive chelation protocol, this product is not inexpensive, but the recommended maintenance doses, once your heavy metal levels are under control, can make it affordable over the long haul.
Posted by JAC (Member # 34240) on :
Thank you all for your replies. I appreciate your sharing your thoughts.
I am going to try caster oil pack and then later an epson salt bath.
Lemons sound easy enough to detoxify. TY for the suggestion.
My friend is a cnhp and always has a suggestion of another herb like product.
I have had allergic reactions in the past with her cleanses so that I get nervous when she suggests something new.
I don't like when my throat feels like its closing. Thats what I relate detoxes and cleanses to now.
Truthfully a bath knocks me out for the day. It totally drains me of any life in me. But I will try that.
Thank you again
Posted by scorpiogirl (Member # 31907) on :
Jac,
If the bath knocks the life out of you then try adding 5-10 drops of peppermint essential oil. Make sure you only work w/ organic stuff.
Ginger, rosemary, lemon essential oils are great too... but I personally like the peppermint. Do NOT add more than 10 drops at one time though!! So if you're going to mix two, then do 5 drops of each. That should perk you right up!
Posted by JAC (Member # 34240) on :
Seriously oils? How does that work?
Posted by scorpiogirl (Member # 31907) on :
I have been using essential oils since college and that's a LONG time ago. This is what I reach for the most for relaxing (lavender) for energy (peppermint), for stuffy noses (eucalyptus, myrrh and frankincense), etc. In fact, my little one loves the Myrrh and Frankincense the best for when she's all stuffed up and can't breath.
Give it a try... just make sure you get the organic ones though. I like buying mine from my local farmer's market. Which reminds me, since I'm getting insomnia again, I'll drip 5 drops of Lavender essential oil on a cotton ball and leave it on my nightstand. This will relax me enough to fall asleep.
When I'm flying and anxious I rub on my pulse (but be careful when you do this b/c the straight oil can be very strong!!). I also use for my headache or mix w/ a base oil for massage. So as you can see you can do so much w/ this!!
Posted by FYRECRACKER (Member # 28568) on :
On the LEMON oil drops for baths... I don't recommend.
Maybe i just had a freak experience, but the lemon oil in the bath made my skin VERY agitated. Red, burning like, not fun.
Posted by kellyjk4 (Member # 19731) on :
JAC, you are asking the question that I think all of us ask at one point, and sometimes more than once.
It is hard to continue treatment when you feel so awful.
It's very hard to keep it all straight and put such effort into getting well.
You just can't give up. Getting worse temporarily is so much better than going steadily downhill for the rest of your life.
Everyone has great suggestions here.
I just wanted to tell you that my LLMD believes in aromatherapy. I haven't tried it yet (still adding in medications and supplements), but he really recommends that his patients try it.
Also, when you take a bath, make sure the water is just warm and not hot. I was told by a friend that hot baths are better, but I get very sick when I do that.
I tried warm baths with epsom salt and hydrogen peroxide and it helps a lot.
I hope you find some relief soon.
Posted by nefferdun (Member # 20157) on :
JAC, I was extremely sick, maybe not as sick as you, but it was bad and the herxing was worse. I got through it and I am much better. Recovery is what you have to keep in mind.
The alternative to not treating is way worse than everything you have been through because it does not stabilize - it only gets worse and worse. There is no- this is as bad as it gets.
You can ask your doctor for IV Glutathione which is the most powerful detoxer there is. Many patients feel relief from pain in minutes. Otherwise Alpha Lipoic Acid is a powerful antioxidant and detoxer.
Low Dose Naltrexone can also help with pain and inflammation especially when your body is attacking itself, such as RA. It is an immune stimulant so it will help your body fight the disease.
You need to be very careful with your diet to eliminate inflammatory foods like sugar, white flour, alcohol etc. Make sure you take supplements that are depleted by the disease and support nerves and muscles, like magnesium and B12. Vitamin D is critical to immune support and we are entering winter, so don't forget it.
Posted by JAC (Member # 34240) on :
I don't know how you people can do this. It has been day in and day out not being able to function. For over 2 years.
For 2 years I lived content with ensure and bread and potatoes. Now I can finally eat and it doesn't make me feel better.
Now my diet consists of root plants, fish, chicken and oatmeal. No dairy, no carbs, no sugar.
My husband works 2 mornings a week so he can be home to take care of me.
This is not a life. This is being trapped in a shell of skin.
Constant pain and a fresh set of sheets doesn't make me positive about this treatment.
Epson salt bath did not relieve pain, caster oil pack I'm not sure if it helped.
I guess I fed the parasites for 2 years but I felt better then, than I do now.
I take so many of the supplements all of you have mentioned, there has been no sign of relief. 27 pills a day to swallow.
I am sure most of you have it worse. You have been through it much longer. Its just not in my makeup to be down for so long with no relief in sight.
Lymetoo, surgeries have always been a quick fix and then you move on. I am down now, no moving on.
Posted by chastain (Member # 34236) on :
hi jac...i dont know how we all do it either. i wish i could do something to take way your pain.
please know i am thinking of you, and i hope you can hang in there. i am trying to remind myself WHERE THERE IS LIFE THERE IS HOPE.
ill be honest, i have yet to really feel it and believe it fully in my heart, but i wish for the peace and serenity that hope can bring to me, and to all of you too.
love, jess
Posted by Brussels (Member # 13480) on :
27 pills in a day? That is NOT a lot, in my opinion.
Detoxing is an art in itself. It is not by chance that most people here take so many supplements besides their killing protocols. So that they feel more normal in a day.
You got to know the exact timing for each, so that they work properly!
I took possibly one aspirin every 5 years before lyme. And that was all my medicine for that period! I ended up taking about 60 capsules a day of herbs and supplements PLUS all the homeopathics during lyme. Plus the microcurrent, the massages etc.
At least, my life could go on. I can't say 'normal' because of the time I spent with treatment (ingesting the pills, etc). But it felt normal, meaning, not many side effects from herxes.
But it is an art, it is not something you learn in a couple of days with a couple of supplements.
We ALL have HUNDREDS of products in our medicine cabinets, specifically bought to treat herxes or lyme related conditions. And then other dozens or hundreds in the garbage bin, as they didn't work for anything.
I hope it doesn't sound discouraging. I see it as a long term investment for my whole health, not only lyme disease. What you learn in this lyme journey can be used in many other ways in the future.
After my hundreds of products, I am healed!!
It worths to keep going on!!!
-------- As you had so many surgeries, I would suggest you look into the topic: neural therapy and scars. Scars can interfere with your general health.
If your health has been so bad the last years, you might have problems with your teeth? Look into the problem: root canals and cavitations. Cleaning the mouth is very important according to many European practioners.
Another thing to take in consideration in my opinion: EMR exposition, specially during the night. The difference of quality of sleep (when your body should be detoxing and recharging for the next day) is amazing, when you sleep in an EMR free bedroom.
These are things that I treated and I found extremely helpful, besides of lyme disease treatment.
Good luck!!!!
Posted by abby-do (Member # 25440) on :
JAC, you can't give up, the pain you are going thru with treatment will become your way of life and the future will be a slow painful death.
I have been dealing with Lyme about 14 years and only diagnosed 2009. I have cabinets spilling over with herbs, tinctures, tisanes, vitamins, essential oils etc. And more darn electrical devices, including Colloidial silver makers (2) AC and DC, Grounding bed sheet, Q link for EMFs, essential oil diffuser, Hulda Clark Zapper,Rife Machine DP200, Rife Machine(Doug Coil), pendulum and now a biotensor....most recent is the PE-I and nosodes....
All of the above brought me from a 2 to a 5 on the scale of 1 to 10...after adding the PEI I have improved another 10% so far...Everything I take causes me to herx and until I understood my body...I just thought I was getting worse and at age 69 I don't have a lot of years to get better.
Detoxing/binding has been my saving grace, listen to Brussels and the others....for me its lemon water, Heel systems detox, chlorella, apple pectin, cilantro. Alpha Lipoic Acid....There may be better detoxing and binding agents out there but this is what is working for me.
I don't have a doctor to treat me or even work with me so I just read and work on myself and boy is that not easy with all the neuro problems, brain fog, shaking and twitching...(what I call my St Vitus dance).....I will try most anything but about the only thing I won't try is giving up.
As for the pain, I still haven't found a good solution for the joint pain/muscle pain but for leg and foot cramps and heart palpitations, Magnesiums oil is working for me. Have to add the pain is getting less severe and less frequent.
Although I have no family around me or family support, I have never felt alone with all the lyme groups on the internet.
Hang in there Jac and fight.
Posted by JAC (Member # 34240) on :
Please know that I appreciate your imput greatly. I have taken some suggestions and am open to try them.
It's not life that I want to give up on, its the treatments. I was able to function fine before treatment. I was sick but still able to function with a full life.
I have a high tolerence for pain. I have no tolerence for uncertainty in a treatment. That in itself causes frustration and anxiety.
With that being said I have the wrong disease for my tolerence level according to your posts. LOL
I try to look at this with some humor. Making jokes about feeling green around the gills. Green is my favorite color, just not Lyme. Its better than being blue.....
As far as knowing the timing on taking supplements that Brussel brought out. How in the world do I know what is and is not working?
All I can see is progression is going downhill at the moment. Perhaps no pain no gain??? I have to get worse before I feel better?
I try to introduce 1 supplement every 4 days. My timing on taking them is strictly 8am, 4pm and 11pm.
Its hard to see any improvement. Perhaps my way of taking them needs to be adjusted IDK. I am up for any suggestions as to a schedule to see if any of them make a difference.
There are so many of you who have been on so much. Do you know your body better than I do mine or have you learned this knack of identifying whats working for you? Please share! Cause I am just not getting it.
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