I'm LymeAware's husband and I have a question. I'll try to keep it brief. We have been doing rife treatments a la Bryan Rosner's book since June. In general things had gotten a little better by August, but then in Sept-Oct things got worse, couldn't figure out why, nothing seemed to affect it -- possibly just one of those quirks of the Lyme.
She started getting more tremors on and off, and then occasional seizures over the weeks. We took two weeks off to do an antibiotic (as suggested by Rosner every few months), then did a rife treatment. Since then, every night and sometimes during the day she has had seizures; tonight it was 3+ hours on and off.
We are seeing an LLND but she doesn't have experience with seizures.
This is clearly a herx, but it is also an exaggeration of symptoms that were previously mild. Our hope is that things will abruptly improve as quickly as they went south, but who knows. I have had to take off work this week to monitor her.
Does anyone have any suggestions, or support of any sort?
We considered the ER, or urgent care, but I've been reading a bit about them and it sounds like this is neither life-threatening enough nor common enough for them to be able to do anything about it. Does that assessment sound right?
We also considered seeing a neurologist, but all of the political issues start jumping in. Do people generally recommend informing non-LLMDs about a Lyme diagnosis? If not, what exactly do you say to them? what story do you tell?
Does anyone have any other recommendations as to what to do? Supplements, herbs? Wait it out?
Has anyone had any similar experiences? How common are these symptoms with borrelia/bartonella/babesia?
Thanks.
Posts: 8 | From OR | Registered: Nov 2010
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Carol in PA
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I wonder if the increased neurotoxins from the bacteria die-off are causing these problems.
What are you doing for liver support? You can take supplements that help provide the liver with what it needs to make glutathione.
posted
Thanks Carol. We're doing as much as we can think of/I can handle for detox. Magnesium is a biggie I know, and I'm taking a lot -- 1,200mg a day.
We'll definitely discuss the other suggestions you made. Thank you.
While able to be at the computer for a bit this morning, I'll add to my husband's questions for anyone with advice on this, with one more:
** Is there a point at which prolonged, or repeated seizures do need to be treated as an emergency (possibly life-threatening)?
Want to know if there is a marker at which point we should seek immediate assistance. In general we are figuring that going to the ER would cause more problems than it solves, but I know that isn't always the case.
I am not losing consciousness, am still fairly mentally able, retain control of my bladder/bowels, and although I'm often quite nauseous during them I haven't vomited.
During the seizures I alternate between total body stiffness in an exaggerated position (ex: suddenly 45 degrees from a laying down position), and then go into convulsions.
Although these happened before, the main concerning feature is that these seizures now go on for SO long, with seizure after seizure for hours at times. It usually lasts about an hour, but has been 2 hours, or last night's 3+ hours. It's really exhausting.
Since this started, despite total exhaustion I don't seem able to sleep very long either (which never was a problem before). We're now on our 4th day of this.
Thanks all for your thoughts...both on my husband's questions and my own.
Posts: 232 | From Oregon | Registered: May 2010
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Keebler
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- Oh, I see that you are in Oregon.
I'm so sorry. I have lyme, plus many co infections and I also deal with seizures. I am sorry to report that this is probably the very worst state in which to have both lyme AND seizures from lyme.
The very worst. I've had horrible experiences with many doctors in the Portland area. Neurologists have kicked me out of their offices when seizures hit (and I am just about the nicest, most grounded and reasonable person I know so it was not because I have a bad personality. I am literally a Ms. Congeniality, of sorts - but I did want some answers - and help. I was treated like scum, instead).
But, not only do they not get that lyme seizures are different than usual and that they often just don't show on a EEG (I had several that they missed them but 3 different QEEGs did show them. QEEGs are not done my MDs, though.)
I've also been kicked out of 2 different E.R.s for seizures. Lyme was in my chart and when they saw that, they refused treatment and told me to go home. I was not there for lyme treatment but because EMTs strongly suggested it since they could not stop seizure cycles.
Even after a violent seizure hit from the ER intercom blasting over my head, startling me, two doctors accused me of trying to throw myself off the table and threw me out.
What they should have done: IV magnesium, etc.
MDs in Oregon are trained to discount lyme patients - totally - as you may know since you found a LL ND,
I have some links that may be of help. But Magnesium is the number one thing. 1,200 mg may not be enough. And it must be in divided does. She may need up to 2,000 mg (or to bowel tolerance). Shots or IV may be needed.
Now, just in case the seizures could be for some other reason, you might see a neurologist to run out other causes. But I caution you against even hinting at lyme - that instant changes everything.
� Are these seizures triggered by sudden startles of sound, light, motion ? These need not even be huge startles, very slight sounds or motion or a flash can send me flying.
If they are sensory triggered, I will know how to better answer you.
And, of course, consider mold exposure. That will also trigger seizures for me. As will GLUTEN, ASPARTAME & MSG - even a slight trace will do. Never trust anything someone else has made.
� AVOID GLUTAMATE supplements and foods high in glutamate. This is very important. Check all supplement and any that contain glutamate, stop. Foods that are moderate are okay, if consumed in moderation.
� ADD SUGAR (best as glucose tablets from your pharmacy) should be given during seizure breaks - and after seizures. Seriously. I can't explain now but see the porphyria thread to follow.
The brain also uses a lot of glucose during a seizure and that must be replace or the seizures can go on and on, from low glucose to the brain. Brain cells can die from lack of glucose.
After the emergency, counter with anti-candida measures. Olive Leaf Extract is best. Some stronger supplements like caprylic acid can trigger seizures, though.
IV Glucose may be needed, along with IV magnesium, taurine and B-6, B-12. Possibly IV glutathione but I'd get a LL NDs advice on that. Other liver support in the porphyria thread below.
Back later. -
[ 11-11-2010, 01:05 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Anyone with severe herx needs to consider this. First, see the "Secondary Porphyria" post. ----------------
Still, I have more to add so come back in a couple hours. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Hi, L.A. & L.A.'s dear hubby! Very sorry to hear of LymeAware's horrid, exhausting seizures! Praying these will pass soon and you can enjoy some rest.
LymeAware's Husband, We honor you! Thank you for caring for your dear wife in her time of great need!
I'm not a healthcare professional, just a Lymie.
Can't comment on rife. I use Asyra PRO bio-energetic testing & homeopathic remedies to compliment abx, herbs & nutritional supps under the care of a fine LLMD. Making progress!
Here goes w/ my understanding:
Q: things had gotten a little better by August, but then in Sept-Oct things got worse, couldn't figure out why, nothing seemed to affect it -- possibly just one of those quirks of the Lyme.
A: For sure! Ups & downs are part of our healing path. Remain optimistic, but be ready for some bad days, too.
My LLMD recently cautioned me to do just that. Brace yourself for the possibility you may experience big dips after significant progress. That's Lyme & co's...
You may wish to read more about Herxing. I do not think a true Herx would last for days.
LAH's comment: We are seeing an LLND but she doesn't have experience with seizures.
A: That's unfortunate. A social worker was first to diagnose my neuroborreliosis-induced focal seizures! Many ducks had NO clue.
Q: We considered the ER, or urgent care, but I've been reading a bit about them and it sounds like this is neither life-threatening enough nor common enough for them to be able to do anything about it. Does that assessment sound right?
A: Yes. SO sad, so WRONG, but seems true. In these United States of America, it's generally not safe for a patient suffering from late stage chronic Lyme disease to go into an ER.
I, and many LymeNet members, have been verbally & emotionally abused in an ER by nurses and ducks who never heard of Babesia or Bartonella.
The verbal and emotional abuse can lead to actual physical abuse when patients cannot have lights dimmed, or pillows & blankets added in a simple attempt to be more comfortable and rest.
Staff can become very irritated by a Lyme patient who understands appropriate self-care for the emerging epidemic infections they refuse to learn about.
Seems ducks & IDSA-brainwashed nurses would rather let a Lyme patient suffer unattended in the ER than actually listen, learn, and help with even basic comfort care. Typical USA ER's can become horrific torture chambers for someone in the throws of chronic Lyme disease.
On a positive note, Urgent care facilities have been of help for some issues. More so than PCP ducks...
Q: We also considered seeing a neurologist, but
A: Good thing you avoided that insult!
There are a couple exceptional LL or Lyme-friendly neurologists in the USA, but they are RARE. You may wish to query on Seeking Doc forum.
Many wise Lyme patients no longer allow ducky neurologists to make money off of insulting them. When and if one wishes to learn, they can contact ILADS.
Q: Do people generally recommend informing non-LLMDs about a Lyme diagnosis?
A: "Generally" no, not at first. Always gotta feel 'em out...
Q: If not, what exactly do you say to them? what story do you tell?
A: Don't say too much. A brief, honest account you've practiced already seems best.
There are extensive, valuable threads on this. Do a search, or a kind LymeNetter may come along w/ link.
It's hard to get used to, but I get slammed if I inform most people about my (well-documented) tick-borne infections. CDC positive with bull's eye rash still seen as meaningless to the clueless masses...
When LymeAware must go to an ER, be sure to have a short list of medications she takes. You may wish to work on that list in advance and keep a couple copies in glove compartments, purse, or something.
There's been a good thread about that, too. I recall LymeToo had helpful tips...
Q: Does anyone have any other recommendations as to what to do? Supplements, herbs? Wait it out?
A: You'll receive lots of ideas here. Carefully consider what is appropriate for your family's health.
The ILADS Treatment Guidelines by Dr. B. (16th edition, Oct 2008) and Healing Lyme by S. H. Buhner are excellent, trusted resources.
Overall, I'm concerned LymeAware may not kick her Lyme & co's without some abx along the way.
Q: Has anyone had any similar experiences?
A: Since my LD got REALLY bad and I became more disabled, I ended up in the ER too many times when found alone by others who were horrified by the pain levels from my LD symptoms. Nothing of value came of those trips.
YMMV (means Your Mileage May Vary, so BE WARY of ALL advice you receive).
In contrast, I had three horrific herx's (each less than 24 hours) during which I fought thru it at home and was WAY better off after, having avoided useless ER torture.
An outpouring of human kindness, friendly tips, and prayers from members here did me WAY more good than any hospital ever yet. Again, YMMV.
Q: How common are these symptoms with borrelia/bartonella/babesia?
A: Seizures are a manifestation of late-stage, disseminated LD.
Keebler
Honored Contributor (25K+ posts)
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posted
- Some links that have helped me (although the type & spacing in all are atrocious. See if someone else can copy, paste, edit and print for easier reading): ---------------------
Topic: NATURAL SLEEP - Links to articles & supplements
===========================
Keep your head and neck as supported as possible to prevent strain - well, as much as possible. The neck and back of the head can nearly tear from the force of flexing back during seizures.
===========================
BODY WORK. Massage can help to avoid seizures by calming the nervous systems and with lymph/liver support.
FELDENKRAIS may be of exceptional help, especially if the inner ear is causing stress. Links to follow. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- For my, the vestibular system in intricately involved in the seizure trigger. Then the brain takes over or the brain was barely managing, trying to put off a seizure but my ears added the last straw to kick it off.
Lyme, babesia, bartonella, Cpn, etc. can all add to brain and "vestibularly triggered" seizure activity. For those who have ear issues, an ototoxic drug can be the last straw for a seizure trigger, too. -----------------
ALL EARS. Specifically for LYME patients - lots of details about ears and what can help:
� of the way down page one, there are lots of LIVER LINKS:
posted
Very quickly, since time is limited at the moment:
Thanks so much for the support.
At the moment I have not seen a clear sensory trigger for the seizures but it is not primarily caused by sounds or lights. However it is extremely reliable that when we lay her down to bed at night the seizures begin almost immediately. So posture, fatigue, and the relaxation of the tension of the day's activities seem to be the primary things. Time may have something to do with it though too, because sometimes she can lie down midday no problem.
Posts: 8 | From OR | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
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. . . Sarah is a woman in mid-life with two grown children. After a disabling bout with Lyme disease, she felt that her feet �refused to follow orders.�
Her gait was disturbed and simple tasks became hazardous. One evening she broke her ankle as she walked across her bedroom! Now her determination to stay mobile was burdened by more pain and weakness.
At this point, Sarah�s massage therapist sent her to me for Functional Integration lessons. She made immediate and rapid progress; her feet found their way; and her gait became stable and fluid.
�In the aftermath of Lyme disease, Feldenkrais� lessons contributed to my entire sense of well-being. The movements improved my fine motor skills. Also, because I was walking all wrong, it tired me out.
I knew I was walking incorrectly, but I didn�t know how to correct the problem�now that I�m walking better, I have more stamina,� she explains. . . .
=========================
BIOFEEDBACK
Biofeedback training is often covered by insurance for a diagnosis of migraine. Biofeedback cannot replace the wonderful benefit of hands-on work but it can certainly augment the success.
NEUROFEEDBACK (also called QEEG Training) is also helpful in certain cases. Neurofeedback Brain Mapping (QEEG) was most helpful in pinpointing the place in my brain connected to seizures. Many EEGs failed.
And neurofeedback helped me so to train my brain but, after a lot of effort and time, the Ph.D. told me he thought I needed to better address infections from lyme + co. as I just could not make progress with adequately addressing infection.
But, in Oregon, that's very difficult to do.
Since, andrographis has been the best help for me. Described here in Buhner's book, "Healing Lyme"
I know you have a LL ND but you might want to look over all the books and articles here, too: ---------------------------
Topic: How to find a LL ND (naturopathic doctor), acupuncturist, etc.
Includes how to find an ILADS-educated LL ND, an Acupuncturist, a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, etc.
Includes many articles and books on complementary / integrative methods - & RIFE links.
=============================
Qi Gong has also helped, to a degree. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- At night, it could be that the adrenal stressors of the day have accumulated. I would look at adrenal support, first. I would avoid rhodiola and regular ginseng, unless as part of a formula, as those might be too stimulating.
One blend that helps me: Adaptocrine (by Apex)
A bit of quinoa before bed may help from a possible drop in blood sugar.
Lying with head and torso elevated to a 30-degree angle is the best position for the inner ear to be calm. But, sometimes, I really need to have my head totally horizon. With the low blood flow common to lyme, the 30-degree angle may be too much of an incline.
I assume you've ruled out new textiles, mold, pillow, etc.
I'm sorry that she has this added to her plate. I'm sorry, too, that I've piled on so much to consider. I've needed every single little piece of information to try to save my brain.
I so wish there were some LL MDs, especially LL neurologists in Oregon. But, as I can't take anti-seizure meds (for me, they make seizures worse), I've had to figure out a lot, along with my ear specialist. I am glad to hear that she does not appear to have vestibular triggers.
I do wish you both success. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Absolutely. The Oregon medical board has an active campaign to pressure doctors to discount lyme. They are instructed that lyme does not exist in Oregon (and in the rare case that it might, it's easily treated within a few days). They are instructed that lyme cannot cause any health problems.
For the occasion nee ER doctor, upon arriving from another state, if they happen to diagnose lyme, they are quickly "re-educated" in this matter.
Even for some of LL NDs, they've been asked to reverse lyme diagnoses when reported to the state agency that is supposed to handle that. Lyme is supposed to be reported. Most patients give up. Some go out of state.
OHSU (the medical college) teaches that lyme is very rare - but even in such a rare case, that it will burn itself out, treated or not, within a few weeks.
The IDSA has a strong hold among the Infectious Diseases specialist here. Kaiser is terrible, too. To start, they all do the wrong tests and, it's been shown they do this on purpose.
Every other specialty is rife with ignorance about lyme, as well. Neurologists and rheumatologists are, across the board, criminally ignorant about tick-borne infections, in my experience over 20 years of being very ill, searching for solutions.
One exception was one neurotologist who told me to get tested (PCP did the wrong tests, tough. They ALWAYS do the wrong tests). But a ND order IGENEX tests and I had 3 tick-borne infections. Still, turned away by doctor after doctor. A dozen doctors turned me away, saying seizures and exhaustion all in my head.
A few MDs who tried to treat lyme beyond a few days had their medical licenses taken away. Another was reprimanded and told he could never treat private patients again. He was allowed to work in the ER but, with the stipulation, to never diagnose or treat lyme again.
Now and then you will hear of someone with a current bulls eye rash who will be given just 3 or 9 days' of one single antibiotic (likely doxycycline). No attention to testing for coinfections. Sometimes, a short treatment might just work. Most often, it does not.
However, in another MDs office (a pediatrician), 2 little girls a summer ago, with clear bulls eye rashes after tick attachments in central Oregon were told that there is no lyme in Oregon and turned away.
Although one state agency (one more closely connected iwth bugs and plant life) does have some good detail on lyme, the Oregon medical board totally discounts that. It' as if the two different groups are on two different planets. And patients suffer. Big time.
Oregon is a horrible place to be for anyone with any tick borne infection. Now, there may be a nice PCP here or there who may understand a bit more and help with some Rx, but there are none who are fully lyme literate enough to really treat.
The good thing is that there are a couple ILADS-trained LL NDs. Still, the breadth of their experience is not that of LLMDs who have treated thousands of patients - in other states.
Oregon has a high rate of "MS" - and both "MS" and fibromyalgia get huge amounts of grant monies (mostly through OHSU). To admit that lyme exists and is often the cause of some of the other diseases that get grant money to just string patients along, well, that would loose money.
But, seriously, the IDSA ID doctors in charge of the state seem to have some very serious problems. Hate and distain is hurled at many lyme patients who are just trying to get better. The medical abuse dished out is beyond criminal.
I rarely discuss this as it takes my focus away from taking care of myself. But, there is a seething problem here with those who run the Oregon medical board.
One smart and compassionate MD who did acknowledge all of the TBD that I tested positive for, well that MD told me the fear of loosing license if I was even treated for babesia. that MD told me it would be best to move out of state as I would never get proper treatment in Oregon. Ever, she though.
That was before a couple ILADS-educated LL NDs came on board. But, still, if one has to go to a MD for ANY reason, if they have lyme, they can expect to be nearly spit upon and kicked out the door. For the nicer doctors who won't, they still just don't know enough to treat a lyme patient. Lyme changes so much.
A person who has lyme has so many considerations that even treatment for other things needs to take lyme into account.
I am not by nature a negative person. I hate to speak ill of others and the degree of medical abuse I've suffered is a nightmare I want to put behind me. I would rather die than ever go to an ER again. Besides, likely, they could not help. They failed me many times before.
But, I'm not complaining just to voice my anger -- I'm dong so only to warn you to be fully aware of the political situation. And it won't get better in this economy. Most lyme patients are pretty much on their own to figure all this out. No insurance in Oregon is going to help. THEY are one reason that the Oregon medical board is so anti-lyme.
Another reason, and understandably so, is MRSA. Oregon is loud and proud of their "No antibiotic" stance. They would rather see a bunch of patients suffer than prescribe abx for longer than a few days.
Seriously, it's a crime to have lyme in Oregon. You need to be very careful about mentioning that word in the presence of any MD. Other than being discounted, either verbally or silently:
First, you will be labeled as a "Difficult Patient" and exiled. this will be written on the inner cover of the patient chart. It is code.
Second, you will be labeled as a psychiatric case, and a lazy bum. Nothing said will ever be taken seriously again, by any doctor - because the chart somehow is accessible to the entire system. Even all the ERs in town seems to have access to the negative marks in the chart before an ambulance even opens the door.
And while fibromyalgia gets big bucks to ignore infection as the cause they do tend to treat "fibromyalgia" patients with just a bit of respect.
However, Oregon doctors have also been instructed to discount "CFS" patients. Told to committee members at one Oregon medical board meeting a few years ago:
Neither "Chronic Fatigue syndrome" nor Lyme exist. And any doctor who treats otherwise, will be dealt with according."
Attending that meeting, was a friend of mine who was the leader for the state CFS association. She recorded that comment but would not tell me exactly who said it or which committee it had been. But, over the years, I learned she heard correctly.
In one ER, during seizures but before the lyme/TBD diagnosis, an ER doctor was very rude to me. I had been using the computer in the patient resource center (spring '96) and had a seizure when a phone rang. The director of that education center knew I had CFS and told the doctor. I knew by then never to do such a thing but I was unconscious.
I also had repeated seizures from sounds in the ER. Much to my dismay and to the distain of the doctor.
The ER MD later said to me: "well, I hear that you have CFS. Doesn't it bother you that you seem to have something for which medical science has no logical explanation?"
I muttered "well, yeah." He countered: "well,, it should. Because there is no such thing as CFS and, young lady, you really need to pull yourself together and stop all this nonsense."
So, not only had I had a very bad seizure, and did not know why, I was just mortified beyond belief. The very kind nurse whispered to me, "you know, we're just not all made the same" implying that my body was not just making all this up.
The kindness of the nurse saved my spirit that day. But there would be many other doctors who dished out the same treatment. I'm a strong person but that has had a negative impact. No one should have to endure such treatment.
One good thing: the glucose IV they gave me seemed to help. A year after that, when diagnosed with porphyria, that was a good clue: IV glucose can help a seizure if excess porphryins are to blame. And that can be a result of lyme, too.
I do hope that changes and the OLDN is working to help educate the public about prevention and doctors about diagnosis. Still, for such a mild and beautiful state, the medical/political/lyme climate is absolutely treacherous.
The opposite climate exists in California. While many regular MD are still not educated about lyme/TBD, LLMDs who acknowledge and treat chronic lyme/TBD are protected by state law.
posted
I had a petit mal seizure before I had any lyme treatment, so it was the disease, not the herx. But it seems possible to have the herx causing seizures also. Tricky business.
My EEG was abnormal and so was my SPECT scan. MRI normal.
My feeling about nearly all neurologists with regard to lyme is that they are only good for testing if it is needed. And if you mention lyme, you will frequently be insulted. Cardiologists will do this too. Unfortunately, the specialists aren't much help for us.
I am not a rife fan, so the thought crossed my mind that seizures could also be a sign of uncontrolled neurolyme. But some people think rife works. It can be very hard to determine when getting worse is a herx vs the disease process is worsening and it isn't a herx.
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"Petit mal" is the older term for what are now called "focal seizures."
Like lou, I had focal seizures before beginning tx with my LLMD, so they were from infections and not a herx.
My MRI and EEG tests were normal, too.
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Keebler
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- Also consider heavy metals. As lyme dies off, it releases heavy metals which can cause seizures. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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What sometimes seems to happen is that a frequency beats back one population of bugs, allowing a another co-infection to become active.
In this case, it may seems you are having a herx, but in reality it is another pathogen causing the trouble. For instance if, after a period of improvement, new or much lesser syx come screaming to the fore, this may be what is happening. If that's the case, you need to figure what frequency will treat the co-.
This has happened to me and to several others. But, as someone who's failed at years and years of abx therapy, I don't have much choice. Though, frequencies have given a good bit of improvement, it is very difficult. Very up and down, and the downs are really bad. It can be awfully terrifying.
I wish you the best of luck.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Just wanted to say thanks for the help. The seizures have diminished considerably and it was probably in large part a herx reaction to the Rife treatment. But they still persist a little so we are still exploring it, but the crisis has passed. Thanks for the support!!
Posts: 8 | From OR | Registered: Nov 2010
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Hi katie -- Keebler isn't active on this board anymore (atleast for awhile). Just thought I'd respond though that although I don't know much about it, WA does seem to have more comprehensive doctors who are more experienced. Whereas there are no LLMDs in OR (just the 2 LLNDs), there are LLMDs in Washington -- and I've heard good things about a few of them.
Many Oregon patients travel to either WA or CA to be seen.
I think you probably have the information about the Oregon LLNDs (if not, let me know and I'll pm you). Good luck!
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