I have read many many posts on here and let me know if I have am not understanding...
If I indeed have Lyme:
My lyme test will most likely come up negative.
My thyroid test will most likely come up negative.
The tests I have taken could possibly come up positive for rh arthritis. I am having a lot of muscle pain, very little joint pain.
So if I think I have Lyme, I have to pay hundreds of dollars to pay Igenex (I do have the kit) to do the Lyme test. And most likely my insurance will not reimburse me for it.
Plus, I have to find a lab that will draw the blood and then I have to pay all of that.
Concerning the thyroid..( I am continually gaining weight at a steady pace) I cannot get a doctor to run the special TSH test if the regular test comes back negative.
Doctors have procedures...to heck with the symptoms.
My doctor is also going to set up an appointment with a rh arthritis doctor. Which I know I don't have athritis. The pain is in my muscles.
I have tried salt/c protocol. I don't know if it pulled out any parasites or not. Bowel movements have many strange looking things in them. I never saw any worms. Reading up on it, "experts" say that most parasites are microscopic and you won't see them anyway.
In addition, I can't take the salt because it does what the "experts" say it will do....Added salt will make you swell and hold water , which it did.
I have taken Parastroy for about three months...don't feel much difference. Keeps my gut kinda rumbly and I expel lots of gas. Seems like it is more of a discomfort.
I tried coconut cream and coconut oil. I have taken them for nearly two months. I might have a little more energy, but nothing really to brag about. And I have been averaging about 1/2 cup of each daily, taken throughout the day.
I have taken green tea capsules for two months. No change.
The "experts" ( and I am using "experts" rather loosely) gave me Mexicam to take for joint pain. Worked pretty good for a month, now It is worse than it ever was.
I have an appointment with an LLMD April 9th. I am going to have to take out a loan to pay him, cash only...
What is wrong with this picture. Salt/c didn't do a lot, Parastroy didn't do a lot, coconut and green tea didn't do a lot...
But the LLMD is some kind of Wizard that can help me where no one else can....IF I go to the right LLMD.
Meanwhile I can pull money out of my rearend to pay for all of this...
Why is this stuff working for others and not really me? How can you afford the doctors? How? The more I read about this stuff, the more confused I get.
I have a job that barely pays 20,000.00 a year. My husband is disabled and together we draw maybe 32,000.00.
Do all of you know something that I don't? Are you all just borrowing money to go to these doctors? I read that a lot of you are not able to work.
The LLMD doctor that I have an appointment with is 6 hours away from me. It will cost me 450.00 plus 200.00 for lab test. 650.00. Not counting the gas it will take and also the day off from work.
I see that it is probably cheaper for me to take the "drugs" and then when the Lyme gets in my brain, just suck it up and become institutionized.
Sorry.....I had to vent.........
Posts: 213 | From Tennessee | Registered: Jan 2013
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glm1111
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posted
carolann,
Totally understand your frustration. You said that your bowel movements have many strange looking things in them.
Sounds like that really could be parasites and you were on the right track with the Parastroy. Understand if you can't take salt.c.
It took me 6 mos of VERY strong herbs from The Monastery of Herbs when I started this regime, and still didn't see anything until I added salt/c.
Parasites can take a long time to get rid of if you have a hyperinfection and they have disseminated. Perhaps taking some pharma meds such as Ivermectin could work for you.
BTW, a lot of parasites can be very large. You might need some stronger antiparasitics as I mentioned.
The salt/c and Parastroy seem to be working since you saw strange things in your BM. This takes a lot of persistence and the right combo to get rid of them, and I encourage you to keep pursuing this path.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Carol in PA
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posted
I'm sorry to hear that coconut cream concentrate and green tea extract did not affect your metabolism like they affected mine. For many people, coconut oil helps the thyroid. And green tea extract seems to help the immune system kill the Lyme bacteria.
I know many people here will disagree with me, but I think it may be a mistake to borrow money for your LLMD visit. For sure he will order more tests than just the Igenex Western Blot...he'll want blood tests and a liver panel, and should test for other tick borne infections.
He'll recommend a number of supplements to ease the nutritional deficiencies and provide liver support. I've based much of my regimen on what LLMD's have suggested to others, keeping those that helped my symptoms.
And then you'll need a followup visit for him to review the test results and suggest meds.
I had to look up Mexicam. "Mexicam (Meloxicam) has pharmacological actions similar to those of other NSAIDs. The drug exhibits antirheumatic, anti-inflammatory, analgesic, and antipyretic activity. It shows potent anti-inflammatory activity in all standard models of inflammation."
I was having good results with a similar pain medication which was then pulled off the market due to heart attacks. This was about ten years ago.
Another NSAID med ended up giving me awful stomach problems, so I had to stop that one. I finally started getting somewhere when I looked into ways to reduce inflammation and found systemic enzymes and omega 3's.
Many of the LLMD's are afraid to prescribe high enough doses of antibiotics due to the possiblility of being put out of business. Have you read "Cure Unknown" by Pamela Weintraub? It explains why.
Have you read any of Keebler's posts about Berberine? Wikipedia has a good explanation of it. It kills bacteria and reduced a number of my Lyme symptoms.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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If I do have Lyme and my doctors try to treat thyroid and arthritic problems, are you saying that the medication that they give me will not help my problems because I have Lyme?
Is that it in a nutshell? Doctors can treat and treat and treat and it will not get better, but worse...because the Lyme won't allow it to get better.
If so, I am not smart enough to weed through and see what works with everyone else and then try what they have tried.
I have already done that and was not successful. Those herbs, salt/c, coconut oil/cream, all of that was pretty expensive.
Is this what all of you have done? Spent years through the years and tried this and that, mostly to no avail?
I cannot understand half of what these posts mean as it is. It has only been six months for me and I am already crazy with this stuff.
What keeps you sane and how do you keep a roof over your heads?
Will a regiman of antibiotics kill this Lyme? If I have Lyme, is my ear problem, my thyroid problem, muscle pain, are all of these problems what you are calling co-infections?
I have also acquired a bad cough and I quit smoking three years ago...Is this a coinfection?
What started me on salt/c in the first place because I purhased the e-book and it said that it would cure Lyme... but it would take a long time.
I was infected two years ago. The place where the tick was keeps coming back and it looks like a mosquito bite. Right now it acts like it is trying to get infected.
That one of the main reasons that I think I have Lyme. I live in rural Tennessee and all my life I have been bitten by ticks.
They were mostly 'dog ticks' and bigger than the last two I was bit by. I had never seen these tiny ticks before. They weren't much bigger than a speck of dirt.
I have watched all the 'you tubes' that all of you put up and watched the "under my skin" video.
This is just too much for me to absorb.
Posts: 213 | From Tennessee | Registered: Jan 2013
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posted
The doctor she is planning to see will honor her pocketbook if she tells him she can't spend a lot of money. I don't want to divulge too much here on the public board, but she can do this without spending an arm and a leg.
Sure you can get well, carol... many of us got well.. it's just that most of them don't hang around here.
No one knows if you've got coinfections or not. Time will tell.
The thyroid medicines should work no matter what illness you have.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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I still haven't made up my mind to go see him. I imagine I will.
This pain is so terrible. What could have made the meloxicam stop working? Would the Lyme be responsible for that.
I could hardly walk, turn over in bed, last night. The pain used to hit just one area at a time and move on to next location. It almost went completely away with the meloxicam.
Now that the meloxicam isn't working anymore, it is all over my body. Last night was the worst, it was in my hip and leg. Could not raise my leg even enough to get in bed. I had to grab my leg and pull it up into bed.
It was in the back of my neck (then it gave me a bad headache) and worked down 1/3 center back. It was in my wrist, my calves and it stays in my feet.
Posts: 213 | From Tennessee | Registered: Jan 2013
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posted
Carolann, I am so sorry for the crud you're going through.
Seems these parasites have a way of overtaking many of our bodies, organ by organ, area by area sometimes.
Sometimes I, too, feel there isn't an answer for me. Sometimes I read the discussions here and think that I've lost a lot of my comprehnsion skills, for I don't know all the chemistry and research.
I'm still struggling to help my doc figure out what may kick this into remission.
Asking the "how do people afford it" question is something I've asked also. As of this point, being bedridden for a couple of months, then still not functional caused me to lose my job that I loved and had held for over 20 yrs.
How do we afford it? I haven't been able to afford many of my supplements for a month now. My doc is out on FMLA, so I haven't been to his office for seven weeks now. We have decided to keep up the abx for now.
As for not being able to function or move sometimes, I wish I knew why our bodies do that. Sometimes I can't get my arm to lift up and take my glasses off to put them on the bedside table.
Only people who have felt that oppressive inability to move, whether from pain or fatigue, can appreciate how horibble one feels when being attacked from within by this.
I've been taking notes on what I take, my body's responses, my ability to function (read, write, move, do anythinga physical), etc. After reading here, I did see some critters. Noted that too.
Hang in there. Don't think to far down the road. Getting by each day, having the appt w/ the doc, and getting to know your own body is the job before you. Docs are people trying to puzzle how to help us, and the good ones will admit they can't solve everything.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by carolann2013: Will a regiman of antibiotics kill this Lyme?
If I have Lyme, is my ear problem, my thyroid problem, muscle pain, are all of these problems what you are calling co-infections?
I have also acquired a bad cough and I quit smoking three years ago...Is this a coinfection?
The ear problem, thyroid problem and muscle pain are likely from Lyme. A bad cough may be from mycoplasma, a co-infection, but it's difficult to diagnose. Editing to add: Chlamydia pneumonia can cause this too.
Many people don't realize this, but taking antibiotics can not kill all the Lyme bacteria. Antibiotics stay in the blood, and the Lyme bacteria live mostly in our cells...in the muscles and nerves.
The white blood cells phage (eat) any bacteria they find in the bloodstream. This is why LLMD's advise to take supplements that help the immune system, like cat's claw and various medicinal mushrooms like AHCC.
I spent $120 on two bottles of AHCC that I took for two months, and didn't notice a thing. Sigh....
Cat's claw stimulates the white blood cells to attack bacteria. Systemic enzymes like Wobenzym reduce the fibrin in the blood, which reduces the biofilm (slime) that can protect bacteria. With less fibrin and biofilm, the white blood cells can find and phage the Lyme bacteria when they are in the blood.
I took Wobenzym and cat's claw for quite a while, and felt better on it.
Even with an LLMD advising you, some treatments may not help and you may need to stop them. You are paying him for his experience in diagnosing and treating this disease.
[ 04-02-2013, 01:05 AM: Message edited by: Carol in PA ]
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Carolann, I am sorry you are in the revolving door.
I understand your frustration as I have lost my family savings and lost my confidence to work and rebuild. This is a rich persons disease to some degree as the insurance companies are turning a blind eye for the most part. And yes we did and continue to borrow money. I am trying to get it back together after fighting for so many years. We are only now realizing the toll this has taken on my whole family,what a shame. On the bright side I have enough of my health back that I am able to at least function. I am not the man I once was. I hope you find your way and start to to realize good health. Until then lets hope that the powers that be figure this out for what it is,a chronic horrible disease complex. Prayers for you!
Posts: 342 | From northern california | Registered: Dec 2010
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posted
We're all different in terms of what helps us. I think it's best to find a really good doctor to work with. They can do bloodtesting too to see how to treat you.
IGeneX lab will pick up 60-70% of people's Lyme when we actually have it. 27 reasons for seronegativity are listed at www.mentalhealthandillness.com/seronegativelymedisease.html. That's why the illness is also treated clinically, by history and symptoms.
There is a new test that can culture the actual bacteria - it's expensive - like $600. A positive test is definite, but a negative result could mean there were no bacteria in the sample.
You can apply to www.lymetap.com for 75% off the cost of IGeneX testing.
I also had pain in my muscles for a very long time, way before joint pain. For me, oral clindamycin, 150mg 2x/day, stopped that pain for 5 years. Now I take turmeric capsules. Some have been able to treat muscle and joint pain with teasel root tincture drops.
I also discovered recently that magnesium relaxed my tight muscles. We have had magnesium discussions on the board - you can search for them - I took Natural Calm magnesium.
I think thyroid testing is pretty straightforward. My doctor tested me for TSH and T3. I tested low for T3, went on Armour thyroid, and I feel much more present.
When you say ear problem, what is that? Can you describe?
Re any co-infections, I recommend googling for their symptoms and seeing if you think you match any - basically babesia, bartonella, ehrlichia - before paying for lots of testing - just my opinion.
Re the money, there are two funds for kids' care, but none for adults. I wish a foundation could be set up for indigent adults that people with a lot of means could contribute to, and they're out there - I read about the millions of investment dollars out there, just waiting for projects to invest in.
I have no idea whether anyone could get a return on their investment at all, or whether this would be charity. People give very large sums for various causes. I wish people who are smart about money could figure out a system to make it work to give to a foundation to fund adult Lyme patients' care.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Wow, I am surprised at some of these responses. You need to go to the Lyme doc period, your health is your wealth.
Ultimately if you learn everything you can, not leave any stone unturned you can have your life back. That's if you are even a hard case, you don't even know that yet.
It's certainly not easy or quick for a lot of us here. I have treated for over 2 1/2 years. I have learned enough that I could treat myself if need be. You need to empower yourself with the knowledge that you need to navigate through this illness where we have virtually no support.
These are some of the things I have done, I tested positive for Lyme, Bartonella, and Babesia.
1) you must find out from the get go if you cannot detox Lyme, Mold or both the test is HLA DR. I wish I had. I am in that boat and you must have Cholesrymine on board if that's the case.
2) I did lots of antibiotics some times up to 5 at a time (insurance covers these)
3) Exercise, no sugar, no gluten, and probiotics.
4) remediate for mold if you can't detox it.
Take care- you can get better!
Posts: 845 | From Northeast | Registered: May 2011
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Carol in PA
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posted
quote:Originally posted by RC1: Wow, I am surprised at some of these responses.
Well, don't be. The wonderful thing about this board is that it is a broad cross section of experiences.
There are so many points of view, and each has value. Of course, the tricky thing is to figure out which path is the right one for you, and even the LLMD's have problems sometimes when their patients don't respond the way they expect.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Carol in PA
Frequent Contributor (5K+ posts)
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posted
quote:Originally posted by carolann2013: This pain is so terrible.
I could hardly walk, turn over in bed, last night. The pain used to hit just one area at a time and move on to next location. It almost went completely away with the meloxicam.
Now...it is all over my body. Last night was the worst, it was in my hip and leg.
Could not raise my leg even enough to get in bed. I had to grab my leg and pull it up into bed.
It was in the back of my neck (then it gave me a bad headache) and worked down 1/3 center back. It was in my wrist, my calves and it stays in my feet.
Some of this migrating pain may be muscle spasms, like the neck and back pain. This can be helped by taking magnesium.
The Lyme bacteria live in our cells and use up the magnesium. Since all of the enzyme processes rely on magnesium, this causes havoc in the body.
Low magnesium can cause anxiety, depression, headaches, panic attacks, muscle twitches and spasms, irregular heartbeats, high blood pressure, asthma, teeth grinding, constipation, menstrual cramps, over sensitivity to light and noise.
When you go looking to buy magnesium, look at the list of ingredients. Magnesium oxide is more difficult to absorb, but it's cheap, so manufacturers put it in multivitamins.
It's bulky, so they can't put in too much, or the vitamin pill would be too large to swallow. Consequently, you'll need to buy a separate magnesium supplement.
I add a little sugar to make a hot lemonade. It comes in other flavors too.
If you can't find these, look for magnesium taurinate or glycinate. I order most of my supplements from iHerb or from Amazon, if the price is better.
You also need Vitamin D for the magnesium to be used in the body. Look for D3.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Carol in PA
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posted
Low Vitamin D can cause bone pain.
Doctors are instructed to test for this by pressing very firmly with a knuckle on the lower shin, which can cause alot of pain.
They do a blood test for D. From what I've read, many LLMD's want their patient's levels to be in the upper range of normal, and prescribe 1000 to 5000 units of D3 daily.
People taking D3 supplements have a lower incidence of colds and influenza, as Vitamin D affects the immune system.
The body needs Vitamin D to utilize magnesium. D needs fats to be absorbed, so I take it when I take my fish oil capsules.
This is part of the overall plan to reduce pain by fixing nutritional deficiencies.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Catgirl
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posted
It's best to push forward and try to stay positive. Know that one day you will be well. It takes time and patience though.
It is very important to eat gluten free, sugar free, nothing processed, get lots of rest and do anaerobic exercise (light weights). Rest is major. And a low fat diet helps me reduce pain.
I also agree with Gael (glm1111). In my opinion, parasites are at the heart of this disease. Everyone has them. I would keep treating them if I were you. Ivermectin makes me feel better, even though I don't see anything in the commode. It's killing something.
A good lyme doc is important. Check out Burrascano's advanced topics in Lyme Disease, and hang in there.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Carol in PA
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posted
Low B12 can cause nerve damage, neuropathy. This causes awful pain sensations, and may be causing the pain in your feet.
Many people have low B12 because they are taking acid blockers to relieve reflux. When the stomach acid is low, you end up deficient in B12.
This is because the stomach acid tears apart the molecules of food. At the end of the small intestine, certain bacteria take the constituents of B12 and put them back together, and the body absorbs it.
After reading reviews for Could It Be B12?: An Epidemic of Misdiagnoses, I wanted to get injections for B12. My family doctor refused to order them, so I went looking for B12 methylcobolamine sublingual.
You can absorb B12 by holding it in your mouth, under the tongue, sublingual.
I bought a powdered B12 in little packets. I took a dose, and a couple hours later the pain in my calves went away!
I was surprised, I hadn't expected that to happen.
I found that the pain came back, so I took B12 every eight hours for about two months, and then I was able to go down to twice per day, then once per day.
posted
Hi Carolann, I remember feeling overwhelmed by the craziness of this disease too. It's too much to comprehend when you're too ill to hardly communicate. I would read and read, and just get more stressed, tired and filled with anxiety.
I've been on abx for a year now and there is slow progress. Last Easter I was miserable. THis Easter I was much better, but I still have bad days.
I say get to a dr. who will prescribe abx and give it a try. I did't realize that there could be some financial help from some of these drs. like lymetoo mentioned. That would be great if they would cut you a break.
I also didn't realize that ins. would cover part of igenex if I tested positive.
I can't work right now either and we spent over $10,000 last year on my lyme treatment, including supplements and everything. It was overwhelming. All I could do was take the meds and sleep as much as possible.
There is a light at the end of the tunnel. Hang in there. You aren't alone.
.................................................
Breaking this up for easier reading for many here.
posted
Oh my, Perhaps that evening I was having a panic attack.
I feel a bit calmer now. I read all of your posts and feel better.
My personality is the kind that when I see a problem, I act quick and solve it quick. Always have been like that. Usually it has been a good trait for me.
This is not the act fast and solve fast. Usually I have always controlled the problem while it was being solved...
I feel totally out of control with this Lyme problem. I haven't any quick solution. I am totally overwhelmed.
I have acted quickly on the things that I have tried, salt/c, Parastroy, coconut, green tea. I am also used to fast resolutions to problems.
I suppose that I will keep my appointment with Dr. C. I have heard several opinions (good and bad) about him.
I am taking a loan out to go, but I have no choice. But I do know that I can't keep taking loans, and going to different LLMD's until I find the right one.
This Dr. C hopefully will be the right doctor. Someone made the comment that "health is your wealth", that is true, but it also seems to take wealth to get your health, especially in this case.
Thanks to everyone. I do feel better. Physically I feel better today. That always makes a person feel better when the pain is almost gone.
Just had a bad day that day.
Thanks bunches. I am glad you are here.
Posts: 213 | From Tennessee | Registered: Jan 2013
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Carol in PA
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posted
A fast way to relieve muscle spasms and pain is to use pulsed magnetic therapy.
This normalizes the electrical charge on either side of the cell walls, and lets nutrients flow in and waste products leave. The cells function better, the mitochondria have the nutrients they need to make energy, and your pain decreases.
I used this to "fix" my knee pain. I used it on back pain, stiff neck, esophageal spasms, nausea, toothache.
Despite reducing pain and headaches with Wobenzym, fish oil, magnesium, B vitamins, B12, and D3, things still hurt, although not as much as before. I take Excedrin.
Capsaicin helps too, as it stimulate endorphins.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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TF
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Member # 14183
posted
carolann, the term "coinfection" is used to describe certain infections that quite often travel with lyme disease. So, if you get lyme, you have a very good chance of getting one or more of these particular infections simultaneously.
The most common coinfections are babesiosis, bartonella, and ehrlichiosis.
These are infections that regular doctors don't know anything about. But, lyme doctors know the symptoms of each of them and will be able to tell by your symptoms alone if you seem to have them. There are also blood tests that can sometimes tell you that you have them. The Igenex blood tests are the best for finding coinfections, but none are perfect (meaning, none are 100% accurate), so lyme doctors go by symptoms a lot to diagnose the coinfections.
The reason coinfections are important is because you can't get rid of lyme unless you also treat and get rid of every coinfection the person has. These diseases all help one another remain in the body.
So, a lyme specialist is who you need to have the best chance of getting well. Each of these coinfections requires a different medication to cure.
This is why one famous lyme doctor says a lyme patient is like a person who has 13 nails in their foot. He means that not only do they have lyme, they also have a number of coinfections, plus viruses, plus parasites, etc. all because the lyme weakens the person's immune system and that allows all types of illnesses to take over.
The person will not feel better until all 13 nails (diseases, viruses, etc.) are removed.
So, lyme is actually a number of diseases. Probably at least 66% of those with lyme disease test positive (thru Igenex) for babesiosis. This is based on the Burrascano Lyme Treatment Guidelines.
I had lyme, babesiosis, and bartonella. Everyone in my area with lyme has all 3.
If you want to look at a short list of symptoms for the most common coinfections, look at pages 26-27 of the Burrascano Guidelines found here:
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
carolann,
I am going to make one more attempt here to repeat what I said above because I think you are making a big mistake not continuing going after parasites.
You said you were "seeing many strange things in your bm" Clearly would be indicative of parasites and that the Parastroy and salt/c were working.
Your other symptoms can be that of a parasitic infection that has had a chance to disseminate. It can take a long time getting rid of this kind of infection, but if not addressed will only get worse.
There is no quick fix with any of these infections. My question is why not stay on antiparasitics whether herbal or pharma since you were seeing results???
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Carolann,So glad to hear you have had a better day. I too am a quick solution to problems solver so I know exactly what you are saying. This is a marathon not a sprint.
I hope I was not too negative sounding in my earlier post. It truly is wonderful when you start to regain health.
I suppose for me I have to constantly remind myself how far I have come. For the most part I feel like a much better person after going through this journey called Lyme. It certainly broadened my horizons and made me a much more compassionate person.
I guess what I'd like to say is you will find a way to get past this,it does happen and it will happen for you!
Keep checking in here as there are many people that understand how nuts this whole thing is,we are all pulling for each other. Blessings
...............................................
Breaking this up for easier reading for many here -
[ 04-03-2013, 02:20 AM: Message edited by: Robin123 ]
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