Topic: I have Lyme Encephalitis. Will be in Hospital Friday
lymetwister
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Member # 19590
posted
For any of you that have ever had this, please share your experience with me.
For all of you that have never had this, let me tell you what I am having:
The worst pain you can imagine in my head. It's NOT a headache, it is 100% pure synthetic PAIN and pressure inside my head. 20/10 on 1-10 scale. At the same time, it feels like my head is being pushed down between my shoulders.
Not sure if what I've been reporting is true Vertigo or not, but I feel like I'm gonna fall over while sitting in a chair. Nauseated and belching at times.
The Pain behind my eyes is also incredulous.
My neck is stiff and sore from the base of my skull down to the mid back, yet I can still touch my chin to my chest. <--Good Sign
My Right eye is watering very frequently.
Tremors are in my Head, Neck, Shoulders, and Arms. To me, it feels like I could have a seizure at any time.
Very weak and fatigued, different from the Herx type.
I went to my local county ER and the ER Doc. did a head CT, which doesn't show this well, but I'm certain this is what I have. He was all set up to do an LP but my Neuro doc. wants to do it, so they held off. I cant get to D.C. until Friday, thats why I'm not there now.
Although Meningitis and Encephalitis are similar, they are also somewhat different.
I am one of the most stoic people you will ever meet so when I tell you I am at my wits end, know that I can not take any more.
This is the first time I have ever had to take a Narcotic in my life. I was given Hydrocodone and I am now taking as needed, but that will equate to every 4 hours I can tell unless something drastically changes.
My Neuro Doc. is Lyme Literate and is in D.C. I may wind up there tomorrow in their ER, but otherwise I'm trying my hardest to hold out for emergency appt. with him on Friday morning.
I was looking back at some of my posts and reported this shaking stuff and tremors and head bobbing a while back. It has just been progressing as I treat.
I really think my last Rife session just caused too much die off and the inflammation is secondary to the die off.
I didn't Rife too frequently or for too long. I just think this is a complication that some people get, even those doing abx.
I'm a perfect example of someone who has had this since perhaps childhood and just so much to kill off.
Please be careful whatever you are doing. You don't want to be where I am now.
Will keep you all updated. Please say a few prayers for me.
LT
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feelfit
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Good luck Twister. Will be thinking of you.
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Melanie Reber
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posted
Just adding a little info for others:
Meningitis is an inflammation of the meninges, the membranes that cover the brain and spinal cord. It is usually caused by bacteria or viruses, but it can also be caused by certain medications or illnesses.
Encephalitis is a rare brain inflammation caused by a virus. The best way to avoid encephalitis is to prevent the illnesses that may lead to it.
...
Can Lyme Disease Cause Encephalitis? By Jennifer Burdett, eHow Editor
Lyme disease is a bacterial disease that is acquired by humans through a bite from a tick if the insect is carrying the bacteria Borrelia burgdorferi. Ticks without Borrelia burgdorferi will not cause Lyme disease.
Usually, the ticks that are carriers of the Borrelia burgdorferi are quite small. Borrelia burgdorferi is a spirochete form of bacteria, and it is the sole trigger for Lyme disease. Lyme disease itself can sometimes cause encephalitis.
Forms of Enchephalitis
# Encephalitus is commonly caused by a virus, but it can also be caused by parasites, fungus or bacteria. It results as a swelling or inflammation of the brain tissue. There's also the possibility of inflammation of the spinal cord. Encephalitis can also occur as a viral infection within the body and can then travel towards the brain.
First Symptoms of Encephalitis
# Encephalitis is a very rare complication of Lyme disease and having Lyme disease does not mean that encephalitis will develop. If it does develop, symptoms usually result in a fever, loss of appetite, loss of energy, headaches, and nausea.
Treatment of Encephalitis
# Depending on the severity of the onset of encephalitis, there are a few treatments available. If the encephalitis is within the early stages of development (within the first 2 weeks of infection), a doctor may prescribe a special diet and painkillers for the headaches. Alternatively, the most common form of medication used is called aciclovir. Aciclovir can be intravenously administered or taken through injection.
posted
I hope you don't have to have an MRI while you're in the hospital. I did when I was feeling almost exactly like what you've described, and it almost killed me.
I had to really, really force myself not to push the button they gave me to stop the process. If we'd stopped, I'd have to go through it again, but really, that was the worst pain I've ever experienced in my life. I wasn't sure if my brain would survive, because it felt like it was being electrocuted.
I'm sorry to hear you're feeling so badly, but I'm sure you'll survive. I did a number of "silly" things to myself early on, that gave me such a herx that I was afraid I'd crippled myself for life. But here I am, 4 years later, walking, climbing stairs, and doing what I thought of as a dream during those bad days.
Lyme sucks, but you can and will get better. Hang in there.
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linky123
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We'll be thinking of you. God bless.
Linky
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seekhelp
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Wishing you the best and hope better times are coming soon. That sounds like a frightening ordeal. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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bettyg
Unregistered
posted
TWISTER,
i'm so sorry for ALL your are going thru and best wishes tomorrow on your testings.
PRAYERS headed your way! thanks for the detailed update about yourself twister.
Are you planning to have a lumbar puncture by your neuro on Friday?
LP are NOT a good test for lyme. It may help with other infections, however, but if they are only looking for lyme, be careful.
------
Are you now taking anti-lyme meds AND magnesium. Both are vital. IV magnesium can be very helpful in reducing the inflammation.
--
An MRI also nearly killed me a couple of times - even triggered seizures and took months to recover from that. They are very LOUD and very JARRING.
How about a SPECT? They are quiet and non-jarring. See Burrasano's link below, page 7 - 8 for more on SPECT.
You really have to ask yourself if you can tend this on your own at home (with your LLMD's guidance, of course) or will you get better care that will not further stress your body if you travel to see the neuro.
Just what can your neuro do for you - and can't that be done with you at home? Traveling is very hard on your brain.
Also to be considered is the heat - and traveling on hot roads with exhaust fumes thicker and closer to the ground from heat. Be sure to keep your distance from cars in front of you.
I sure hope you will have someone to drive you. Be sure to pack ice for your neck and head.
--
If you do go into the hospital, will your LLMD guide treatment or will a hospital staff doctor be in charge? I don't want to harp on this but please do consider staying home, quite and in a dark room, and letting your LLMD guide treatment for you there.
-
[ 06-25-2009, 05:44 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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This explains why a LP is such a poor test. Plus, they can be very painful and you could have a tremendous migraine for weeks afterward needed someone to care for you, at least for many tasks.
And, they are expensive. Even if you do not pay out of pocket, someone is making money from a test that does not work to dx lyme.
AND - even if they found lyme the neuro may go by IDSA standards for treatment and you'd get 9 days' worth or 3-4 weeks max of one medicine alone.
Not enough.
---------------
From:
ILADS Treatment Guidelines for the management of Lyme disease
Lumbar puncture has also been disappointing as a diagnostic test to rule out concomitant central nervous system infection.
In Lyme disease, evaluation of cerebrospinal fluid is unreliable for a diagnosis of encephalopathy and neuropathy because of poor sensitivity.
For example, pleocytosis was present in only one of 27 patients (sensitivity 3%) and with only seven cells. The antibody index was positive (>1) in only one of 27 patients (sensitivity 3%).
An index is the ratio between Lyme ELISA antibodies in the spinal fluid and Lyme ELISA antibodies in the serum. The proposed index of 1.3 would be expected to have even worse sensitivity.
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages
Page 8:
. . .
Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme. Antibodies to Bb are mostly found in Lyme meningitis, and are rarely seen in non-meningitic CNS infection, including advanced encephalopathy.
Even in meningitis, antibodies are detected in the CSF in less than 13% of patients with late disease!
Therefore, spinal taps are only performed on patients with pronounced neurological manifestations in whom the diagnosis is uncertain, if they are seronegative, or are still significantly symptomatic after completion of treatment.
When done, the goal is to rule out other conditions, and to determine if Bb (and Bartonella) antigens or nucleic acids are present.
It is especially important to look for elevated protein and white cells, which would dictate the need for more aggressive therapy, as well as the opening pressure, which can be elevated and add to headaches, especially in children.
. . . . -
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treepatrol
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posted
It hurt like hell I didnt go to hospital i took lots of vicodin and other antiinflamatories mixing them up. It even hurt when I blinked! walking was like a hammer hitting my head everytime my foot landed on the floor. It took about a month for it to subside while back on treatment abx's then it still hurt months later but not like the begining.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
lymetwister
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Member # 19590
posted
Thanks everyone for your replies... This gets crazier and crazier.
I guess what I was having wasn't true vertigo. What I had been getting was a feeling like I was gonna fall out of a chair and like I was riding on a boat with choppy waves.
This morning as soon as I opened my eyes, the room was spinning. I saw the same scene go by me 10 times super fast. I close my eyes but that was worse.
I instantly got terribly nauseated and just layed there scared to death.
This happened again about five minutes later, not as bad, but the same thing.
I don't understand how I'm able to sleep and this crap just wakes me up. As soon as I wake up the head pain is also there and stiff neck. I'm shaking in my head and feel like I'm gonna have a seizure all at the same time.
I don't know that I'm getting an LP. I don't mind MRI's, I've had plenty in the past from sports injuries and even one about 4 months ago. I'm not looking for a Lyme dx, as I already have this from this very same Dr. and my LLMD, but LP's give other information such as CSF pressures, WBC, Protien, etc.
Keebler, thanks for all of the links. This is the first time ever where I can't sit and read all of it.
Perhaps he will do a spect scan and even an EEG. All I know is I can't function at all like this and I am in such discomfort like I've never been.
I hate to be away from home, but in the end, it is peace of mind.
Even if he does the LP, not everyone gets the debilitating headaches, and I already have one, so with Narcs I should get by.
When I took that Percocet last night, I didn't get a buzz at all, but I was able to cope and actually had some laughs with my kids and able to get my mind off this crap.
It sure seems like encephalitis to me. I will let him make the diagnosis, but I can't figure out what else this could be.
Sitting here with an ice pack on my head. Oh the agony.
LT
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posted
Ask the doctors for an MRV (MRI that looks at the veins) or an MRA (looks at arteries). Sounds like your previous Cat Scan and MRI's were clear.
Could this also be from a mosquito bite and unrelated to the lyme right now?
So sorry you have to go through all this pain, hang in there, they'll figure it out and hopefully you'll be sipping lemonade on the 4th.
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Keebler
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posted
-
LT,
That "feeling like (you were) gonna fall out of a chair" and like you were "riding on a boat with choppy waves" sounds like Mal d embarquement syndrome - I recall your having mentioned that in previous posts over the past few months.
An LL inner ear specialist could tell you more but, likely, your inner ear is involved (as is common with lyme).
With "the room was spinning" when you opened your eyes this morning, that kind of vertigo can also be from the inner ear. If it increases with you move your head, there may be a technique that could help (if it is BPV).
Have you taken ginger capsules? Do they help?
You can read more at the Vestibular Disorders Association site:
As for the ice, generally, for lyme, ice is not advised (as per Dr. B's guidelines). I had mentioned that for the road trip if the weather is hot - since much of the nation is now in the 100's - ice in the car would help to keep you from getting over-heated.
However, in an emergency and if this is encelph., the ice may help reduce swelling in the brain. It just might also be something that spirochetes really like.
What is your dose of magnesium? And fish oil? Those should offer some help while you figure out the next step. GINGER capsules should also help the vertigo stuff and it is also anti-inflammatory so could help your head, too.
Good luck with all this working out as gently as possible for you. When the head pain has gotten out of control for me, aggressive rest was sometimes the only thing that helped. But I never had a good LLMD, so I do hope yours has some answers.
posted
LymeTwister, some of your symptoms sound like they could be from your atlas (C-1 vertebrae) being out of alignment.
That can cause extreme vertigo, a feeling of spinning, visual disturbances, resulting nausea, being unable to walk straight (tipping over sideways), nerve impingement. I've had all that and more.
Tight muscles in your neck and upper back can pull your atlas out of alignment, which can produce an amazing amount of pain in the whole area.
The head gets tipped to one side to adjust for the tight muscles, and since the eyes are no longer level, all the normal visual clues are off, producing nausea, dizziness, trouble walking, and confusing the brain on what it is seeing.
Not saying that's all you have wrong, but it could be a contributor.
I don't know your situation, but is there any way you could get a massage or see a chiropractor today?
I'd hate to see you have a bunch of expensive, invasive tests and go through the medical mill when it might just be a temporary structural problem.
Take care, Nutmeg
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Keebler
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posted
-
Nutmeg has an excellent point.
If you can see someone trained in this technique, you can be sure they are gentle but also precise (you don't want any twisting or snap & crack stuff):
I stopped back to suggest that if you do go for that LP, you might also take a sample of your hot tub water with you - in a dark glass jar, not plastic -and keep it from the light.
bejoy
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posted
I get lyme viral encephalitis intermittently.
Headache, neck pain, difficulty with word search and visual processing.
I use LYM homeopathic from Deseret Biologicals and it helps make the virus back down.
When I use LYM with biophotons like the Lightworks machine, I usually get it to back down in a few days.
Got it again this week, and finally figured out what it was. I thought it was a bad chiropractic experience, but was fooling myself.
The homeopathic doesn't interfere with other medications, so it might be worth a try.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Rumigirl
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lymetwister,
(I hope you're still reading this). I had almost exactly the same reaction from a rifing session a few years ago. I was also doing hyperthermia treatments before my rifing, although I can't remember if I did this particular time. Actually, I unwittingly did a LD frequency several times, trying to knock out the flu.
Anyway, I the next day after the session I had a headache that was exactly like you describe. I have had horrible migraines for decades, but his was unreal. I was delerious and had a fever, which I never get. I also get loads of vertigo from neurological herxes.
What I had to do was take Vicodin (codeine w/ tylenol), plus extra tylenol or Ibuprofen round the clock every 4 hours until it passed. I also had to sleep on an improvised wedge, as no way could I lie down---it increased the pain unbelievably. I slept fitfully at best in a delerious haze. It was a herx from hell.
In retrospect, doing some detox, like multiple coffee enemas, miniliver flushes with lemon and olive oil, or just lemon water over and over would have helped a lot to clear it, but I was so in pain and sick, I couldn't do anything but lie there and suffer and take pain meds. But it passed after several days (I forget exactly how long).
Watch out for the rifing. Do it, but be cautious when you do a new frequency or increase the time. PLUS doing the hot tub can increase the killing power by many fold! Chaulk it up to another lesson learned.
Of course, you can get it checked out, but the hospital won't have the vaguest idea about herxes and LD. IV glutathione would help, if your doctor can do it. My experience anyway.
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Keebler
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posted
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Rumigirl has a very good point about taking it easy. About tylenol, sometimes, it can help. But it is very hard on anyone's liver.
I read recently of a man who lost his liver from just a normal dose for a few days . . . so, since liver stress is a major consideration with lyme, when possible, it's desirable to plan out in advance other methods so as to be able to avoid that.
Magnesium and fish oil can also take the place of tylenol in many cases and both are beneficial in many ways.
gemofnj
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posted
Twister,
Will be thinking of you and hope you get some relief soon.
If they dont really come up with anything I would consider some of the other poster's good information regarding vertebrae and detoxing as part of your immense pain.
I had such extreme stiff necks and pain radiating in my neck for months I asked my LLMD if I could have meningitis. I was convinced it was.
She suggested a massage therapist.
I resisted because i didnt think this would help.
I finally went to a very good massage/sports therapist. She was familiar with toxins that linger in the bones and in the large muscles body.
She said it also causes congestion around the nerves in our back and spine.
I have to tell you her treatments were wonderful and it really helped.
Detoxing also sounds like it would be additionally helpful.
Hope you are feeling better soon. Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Keebler
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FDA Group Issues Cautions on Acetaminophen Overdose Commonly Used Pain Drug Poses Serious Danger in Certain Cases, FDA Says
By DAN CHILDS and LAUREN COX ABC News Medical Unit May 28, 2009--
When Antonio Benedi of Springfield, Va., felt a case of the flu coming on one weekend in February 1993, he did what millions of others do -- he reached for a common over-the-counter pain medication.
"I was taking Tylenol like I was supposed to, by the label," he said. A few days later the then 37-year-old Benedi was in a coma and in desperate need of a liver transplant.
Benedi, like hundreds of Americans each year, experienced acute liver failure as a result of taking acetaminophen, the most commonly used painkiller in the country today. Many of these cases are due to either intentional or unintentional overdose. Past research also suggests that combining the medication with alcoholic beverages increases the risk of liver damage.
But Benedi, who was formerly a special assistant to President George H.W. Bush, said that while he did take the medicine on a mostly empty stomach, he neither overdosed on acetaminophen, nor had an alcoholic beverage while he was taking the drug. He said he did occasionally enjoy a glass of wine, but never while taking acetaminophen.
"It's not the mixing of the two; I never misused anything," he said. "I took Tylenol as recommended for three days. By Monday night, my liver was failing. By the time I reached the hospital I was near death.''
Today, Benedi, now 53, is still living with the transplanted liver he received 16 years ago. Three years ago he required a kidney transplant as well -- a result of the damage that his organs sustained from the anti-rejection drugs he had to take after his liver transplant. And now this transplanted kidney may be failing as well.
. . .
The report is not the first time that concerns over the potential for acetaminophen overdose have surfaced. In 2002, Dr. Peter Lurie of the consumer advocacy group Public Citizen appeared before the FDA's Nonprescription Drugs Advisory Committee to relay concerns about unintentional overdoses associated with acetaminophen.
In November 2005, a study in the journal Hepatology found that the majority of acute liver failure cases in the U.S. were due to acetaminophen poisoning. And more recent research has suggested that these cases may be on the rise.
Worse, O'Brien said, is that because many who take the medicine are already sick, they could be experiencing the side effects of acetaminophen poisoning without knowing it.
"That's the problem because some of the symptoms are like the flu: nausea, vomiting, and abdominal pain," he said. "It's usually fatal over a day or two."
(Vicodin) Prescription Painkillers Linked to Hearing Loss
Excerpt:
. . . It is the combination of acetaminophen and hydrocodone that seems to cause hearing loss, though scientists don't yet know how. . . . . -
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Ocean
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SCARY stuff Keebler! Thanks for posting! We rarely use Tyelenol, I took it last Nov when I had an awful headache from a virus or something, but I gave it to my kids over New Years when they were sick with fevers (103-104 degrees) to help them sleep.
Is there a natural pain reliever for headaches?? I believe headaches is going to be a herx reaction when I get my EMEM. I had a massive headache for several days after using a Erchonia cold Laser with Lyme frequencies.
Keebler
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posted
-
Magnesium and Fish Oil are the top two pain relievers. Corydalis is a good pinch hitter, too.
Liver support & protection, massage, water, sleep, gentle exercise, etc. are all vital, too. Generally, if around a herx, not pushing the liver too much in the first place is best. If the liver is stressed, every cell in the body will be, too.
lymetwister
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posted
Hey Everyone,
Just got home. Thanks for all the messages. No admission to the hospital. Instead, going for an MRI on Monday, then back to this great Dr. on Thursday next week.
I was so bad last night, I decided to do a tap water enema. I broke out the 2 Liter water bottle and filled it all the way up.
I was laying on the floor shaking in my arms, legs, head, you name it. My head was hurting so bad.
Well, after I let the enema go, to my surprise, I found 100's and 100's of those freaking things with the red legs on them. I still don't know what they are and have taken them to 3 different labs. My ID Dr. says they definately are not normal, but he couldn't get the identified.
These are the same exact things you see on lymephotos.com under Borellia, although I would think they can't be Borellia as these things are macroscopsic as are the pictures on lymephotos.
Regardless, within 15 min. of this Enema, my head began to clear, the pain began to go away, and the tremors began to ease.
So, I did one more just to make sure I was cleaned out and went to bed.
I woke up this morning much better. No shaking all day, some residual head pain and some anxiety and even some Vertigo for a few hours, but this was way more tolerable and has waxed and wayned all day. This appears to be what Rumigirl spoke of above in her post.
I have had intermittant belching all day today, which tells me there are more to come out. I don't know if this is possible or not, but I swear I saw what looked like macroscopic Spirochetes in the toilet. 100's and 100's of these too and they looked like spirals about 1cm long each one of them.
I don't think this is impossible. If they are so small and can only be seen under 10,000 power, and I have had this for 10 years or more, why can't they now be macroscopic ? I'm no scientist, just a realist and I guess anything is possible.
Off to do another enema, this time coffee style. Thank you everyone for your support during this rough time for me. I'm glad I was able to come home. My Neuro Doc. said if he sees inflamation on the MRI than he will do an LP. He is still trying for the IVIG for me.
It appears I am not detoxing properly, or that I just killed off way too much from the Hot Tub Snorkle thing and the Lyme Rife I did very close together.
One thing is for sure, I havn't gotten rid of all of the parasites, and these suckers some how are living in my intestines. I will now detox detox detox in retaliation.
A lesson learned !
One last thing: When I rifed, I put my head up right to the bulb on the EMEM5a, perhaps this also has something to do with all of this. I have heard the closer you are the deeper the penetration and hence the more die off.
I just want to be done with this disease already. It has taken up one too many days in my life.
Thanks again everyone,
LT
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glm1111
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I am glad you are feeling better. Glad you got rid of the parasites that were making you so sick.
As I have said many times before PARASITES and WORMS play a MAJOR part in Lyme disease!!
-------------------- 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
Wow, how totally mind boggling. I was afraid that you had an occluded vein or vessel since the pain was so intense. Glad youre getting relief.
What an ordeal, someone has to identify these! Do these parasites live outside the intenstines as well? Are these the microfilial nematodes that we hear about?
Does anyone know where/if you can send a sample to a specialty lab?
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linky123
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Wow! That's amazing. So glad you got rid of those things and are feeling better.
Take care and rest easy tonight.
Linky
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posted
Glad you're feeling better. I can't wait to find out what those things are. Be sure to let us know. Can you get a photo to post online?
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glm1111
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posted
psano2,
Go to the lymephotos site a couple post above and and click on borrelia burgdorfer....then scroll down to the bottom and they look like the ones that have legs.
Also, if you saw the post about the worms in the baby diaper and scroll down, you will see other pictures from curezone. I have seen them also, and so have a lot of other people.
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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thanks for the detailed update about yourself twister.
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