Is there any hospital that is chronic Lyme friendly on the east coast?
Are there any centers similar to Hansa or Envita on the east coast?
Posted by Keebler (Member # 12673) on :
- Do you need to be admitted to the hospital for another reason?
I just wonder why you are wondering about a hospital. As most are connected with universities (even if just with their teaching intern - residency programs), they are ALL IDSA minded when it comes to lyme.
If you need to be admitted for some reason, the LLMDs and LL NDs near there would be the best to help you find one that may be better than others but,
NO, you will not find direct treatment for lyme at any hospital. They are all overseen by the IDSA where lyme is concerned.
As for centers, likely if you find a good LL ND, that may be your best bet for a comprehensive approach as those others you mentioned.
To find both a LLMD & a LL ND who work in conjunction with each other would be the best situation, if possible.
There may be a center, somewhere, but any hospital is going to be tied to the IDSA.
I know you know this, but for anyone new who is reading this and wonders why the IDSA doctors will not address chronic lyme:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation. -
Posted by Keebler (Member # 12673) on :
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.) -
Posted by Keebler (Member # 12673) on :
- And, you very city, I hear that the college of osteopathy has started to include some truth about lyme in their curriculum. So, a D.O. with ties to that college may have some advantages.
A D.O. is a Doctor of Osteopathy medicine -- basic guideline is that if the body is in good alignment, it can often correct itself of illness. Still, they some are also full general practititioners, and can prescribe the full range of Rx as a MD. It's just that a DO is not as inclined to offer Rx as quickly as a MD if there are better ways to address a problem.
Of course, any DO who gets into treating lyme is not going to ignore the need for Rx, but they will still incorporate Rx along with other modalities.
A DO is not trained in herbal medicine (as are NDs) but, generally, may tend more toward agreement of such support methods than most regular MDs. (Although, many LLMDs are very integrative, a much higher percentage than of the regular MDs.)
I've heard of a couple of ILADS-educated D.O.s here and there, too.
I don't have all the details but it's worth looking into. -
Posted by VV (Member # 38828) on :
Would a DO deal with stuff like POTS?
Posted by jlsprow (Member # 40450) on :
We see an electro cardiologist for POTS.
Hugs!
Posted by VV (Member # 38828) on :
quote:Originally posted by Keebler: - Do you need to be admitted to the hospital for another reason?
-
I'm not having an emergency. Just severely depleted and thinking of options.
Posted by VV (Member # 38828) on :
Can a neurologist be helpful?
Are there and LLMD neuros?
If I go to a normal one I would not mention Lyme.
Just wondering if a neuro could help with symptomatic treatment.
Posted by Keebler (Member # 12673) on :
- No, a neurologist is not going to help someone with lyme. There is either just one, or maybe two LL neurologists in the entire U.S. (one recently died in a traffic accident but I'm not sure if it was 3 before or 2).
Still, even then, no neurologist is going to outline a treatment plan. That's up to the LLMD or LL ND to do.
Do you not have a LLMD or LL ND now? I assume not. If you find a good LLMD &/or LL ND, they are your best guides in case you might need other experts.
Most of the time, there in nothing a specialist can do when symptoms are due to lyme, other tick-borne infections, or other issues lyme causes. It's up to the LLMD or LL ND and the treatment plans set up with them.
IF a specialist is need, they will know and they will know who to suggest. -
Posted by Keebler (Member # 12673) on :
EXERCISE INTOLERANCE is (partially) explained in the article: "when exercise doesn't work out" (and what we can do about that)
ADRENAL, CARDIAC, MITOCHONDRIA & MYELIN SUPPORT - that all helps movement better work for us
Styles discussed: Pilates; Qi Gong; Tai Chi; Yoga; water; strolling; etc. -
Posted by VV (Member # 38828) on :
Keebler, what about things like POTS and myasthenia gravis?
Do LLMDs treat that stuff as well?
Posted by Keebler (Member # 12673) on :
- POTS is often because of the adrenal dysfunction lyme causes. See the cardiac thread above. Lots of pots there about POTS and NMH. Adrenal care is vital first.
Yes, a LLMD will address that.
It sounds as if you've not yet been to see a LLMD. EVERY LLMD knows about POTS. It's very common with lyme.
I hope you can find one soon (though I know full well that many of us just don't have access and we have to learn what we can on our own. It's like being tossed into a graduate program, mid-stream without even having the undergraduate prerequisites).
Myasthenia Gravis is an entirely different diagnosis and cause. However, it - or what may look like it - could be connected with lyme. A person could have both, for separate reasons. Or lyme can cause those kind of symptoms.
A LLMD is best to help sort that out.
Do you have a separate diagnosis of myasthenia gravis? Did a LLMD then explore the causes of that?
If steroids are suggested (as they may be for MG), AVOID THEM as they can make lyme much worse. If you have both MG and Lyme, you really need a LLMD all the more.
Possibly, addressing lyme will help with other symptoms if "true" MG but, if other diagnoses are to be treated - the LLMD must know all about that so that a comprehensive plan can work, taking everything into account. -
Posted by TF (Member # 14183) on :
I've been in the lyme community for at least 10 years. I have never heard of any lyme friendly hospital on the east coast.
And, the "lyme centers" that are on the east coast are generally not where others advise lyme patients to go. In other words, none of them have great reputations.
The best treatment is from a great lyme doctor. We have a number of them in the Baltimore-Washington area, which is not too far from Philly.
Some add another person to handle issues the lyme doc specifically says he/she won't handle, but you need to get referrals from other lyme patients for such a person to be sure the person is lyme friendly.
Posted by lax mom (Member # 38743) on :
VV: my LLMD, very respected, sent me out to rule out ANS dysfunction/POTS.
I had to find the specialist myself and I did not mention Lyme.
First I saw a Electrophysiologist Cardiologist, then a Neuro. The Neuro immediately said my ANS was in bad shape.
Posted by Keebler (Member # 12673) on :
- Rather than chasing after symptoms, it's vital to get the cause, then add support meausures to help along the way.
Lyme can CAUSE so many different symptoms and when I say "lyme" I also mean all the other tick-borne infections, parasites, heavy metal, etc. that go with lyme. It's a complex process and I've never met any regular doctor or any specialist that comes close to the knowledge of an ILADS "educated" LL doctor regarding tick-borne infections.
We grew up thinking that we go to this doctor for this symptom and that doctor for that symptoms. When lyme & co. are at the heart of it, start there.
This article is very hard to read, so you may want to copy, paste, add space and change the font or size. This is the most valuable article that I've seen regarding all the ways lyme can affect a body, brain and personality.
While it can be physically hard and emotionally draining to read all this (and it may take several reading sessions), please be careful to read with the mind of a detective rather than of a patient (if you are feeling scared, which is very normal). So much makes SENSE now, the way he explains it.
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
Posted by Keebler (Member # 12673) on :
Topic: replication within cystic forms of lyme -
Posted by lax mom (Member # 38743) on :
In my opinion, you need to have an LLMD on board if you don't already.
Then, while waiting to heal the Lyme, you could see any electrophysiologist or general cardiologist and tell them you are having a racing heart. The first thing they do is RX a beta-blocker.
Posted by VV (Member # 38828) on :
Christ Keebler, I know it's Lyme! But if Lyme is causing this other stuff, I would really like to find help for that.
My LLMD just gave me a script for Amoxy and that's it.
Wish I could take it but my body is too bad right now. Last round of abx fouled me in a way that I have not relieved yet.
YOU CAN'T JUST KEEP HAMMERING AWAY AT "TREAT LYME" IF THE PATIENT IS NOT IN A CONDITION TO HANDLE SAID TREATMENT.
Saying Lyme is the cause is fine, but I sure as hell don't understand why you wouldn't want to treat those issues or insist that only Lyme treatment should be used.
People obviously support adrenals and thyroid etc.
Why can't a neuro help? They have studied and have trained to do certain things that may be useful.
Posted by VV (Member # 38828) on :
"while waiting to heal the Lyme"
Can't do any herxing right now. I need some kind of relief first.
Posted by Keebler (Member # 12673) on :
- MOST LLMDs know all this below, and so much more, about how to best support a patient during treatment.
Start with liver support. That includes magnesium which is also good for so much more.
Magnesium is the first thing I think of for heart help, it can help regulate rhythm and calm an overactive nervous system. Lyme depletes us of magnesium. So we need to add that back.
FISH OIL, too, is so important to help us get through the day.
If your doctor only gave you one abx and you have trouble with that, it appears that you will need to find a LL doctor who has a more comprehensive approach.
So, I know that's why you posted in effect "where can I go for that?"
It may come in bits and pieces. I wish there were enough real LL doctors for all of us. In the meantime, there are some things we can do, even if we are left to sort a lot out for ourselves.
First: see the liver support thread. Without liver support, any treatment can be too harsh.
EXERCISE INTOLERANCE is (partially) explained in the article: "when exercise doesn't work out" (and what we can do about that)
ADRENAL, CARDIAC, MITOCHONDRIA & MYELIN SUPPORT - that all helps movement better work for us
Styles discussed: Pilates; Qi Gong; Tai Chi; Yoga; water; strolling; etc. -
Posted by poppy (Member # 5355) on :
I have been to a number of specialists. Not one gave me any symptomatic relief. The most they did was to document the symptoms. Maybe that is useful to the lyme doc.
Keebler is right that lyme treatment will fix a lot of those problems. If you can't take treatment, this is going to be a big issue. Picture a TB patient who is not being treated for his/her infection but getting this and that Rx for the symptoms. Will this end well?
I understand the herxing problem. I am only able to pulse meds for that reason. Some people have genetic issues that must be resolved before they are able to take treatment. Not sure if you are one of them.
Posted by VV (Member # 38828) on :
You are not listening. I am not saying I will not treat for Lyme, nor am I looking for a neurologist to cure Lyme. I would be looking for a neurologist to treat the *complications of Lyme* so I can feel better enough to do Lyme treatment. Understand?
Also, if I actually do have myasthenia gravis triggered by Lyme, I don't think that easily goes away on it's own.
"Some people have genetic issues that must be resolved before they are able to take treatment. Not sure if you are one of them. "
Waiting for test results. Wondering about MTHFR.
Posted by lax mom (Member # 38743) on :
I respectfully disagree with some of what has been posted.
Dr. H takes each and every one of the 15 differentials and treats them. The one's he can't treat, he tells you to see someone who can. He doesn't solely treat lyme and wait for everything else to fix itself.
Posted by VV (Member # 38828) on :
Dr. H in NY?
Posted by lax mom (Member # 38743) on :
Yes.
Posted by Keebler (Member # 12673) on :
- To be clear, I'm not suggesting to slowly wait but
1. be certain the underlying infections are being adequately addressed
2. support methods along with anti-infective treatment. This can include nutritional support or Rx support.
3. as others mention, if you need to see another kind of expert, a good LLMD will know who to suggest. If.
We can make a lot of assumptions about needing to see all kinds of specialists - because by the time most with lyme are finally diagnosed, so many systems and organs are so greatly affected.
True, it would be nice if each specialist could help us. The truth is that most cannot unless they first are LL. They won't know what they are looking at, how to put it into perspective and how to sort out what is or is not connected.
And, most specialists highly dismiss lyme. The degree of medical abuse is just huge. Huge. Best to avoid that and let a good LLMD guide the way.
I suggest the LLMD first needs to assess your case to sort that out and how to organize the plan, and who will be on the team -
- the LLMD should know experts in the area who are more likely to at least know something about lyme and how it may or may not be connected.
4. LL NDs can be excellent to help with symptom relief. And, if one treatment method just can't be tolerated, this is also where a LL ND can work best as there is always another way to approach it.
5. MAGNESIUM is a very important thing to consider. TAURINE, too. I cannot stress enough the importance of these for anyone with any kind of neurological condition.
I will let this go now but want to say that I know it is overwhelming to have a doctor who says he knows about lyme but you don't think is fully educated enough for you.
Or - maybe not knowing why he starts with just one and no support to help manage herxheimer.
Every LLMD has their own strengths and weaknesses. And not very LLMD is really one. The term is a bit fluid.
I've seen several post here that they spent years "trying to nail jell-o to the wall" but then moved on to a different LLMD who was much more effective.
The choice of LLMD or LL ND is extremely important. And the learning curve is very steep. Bless the new ones but it can take years to get up to speed.
And there may be other constraints that we may not see.
While each person with lyme presents a different set of infections and conditions - and needs - a good LLMD will at least have some kind of plan similar to:
�� Nutritional Supplements in Disseminated Lyme Disease ��
J.J. Burrascano, Jr., MD (2008) - Four pages
[If this link fails, Go to pages 27 - 30 in the original link above.]
==============================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
Things here will surprise you, especially the neurological and emergency links. -
Posted by VV (Member # 38828) on :
"True, it would be nice if each specialist could help us. The truth is that most cannot unless they first are LL "
Keebler, with all due respect I think there are many cases where you need to forfeit the "LL" if need be.
You don't need an "LL" doctor to get you started treating Hashimoto's, Addison's, myasthenia gravis and a number of other conditions, but you can certainly suffer dire consequences by not treating those conditions and only treating the underlying cause, Lyme.
It's just the truth. If you look at the amount of time it takes for some people to eliminate these infections, a Hashi's patient would be in a coma, an MG patient could be in critical condition and an Addison's patient would be dead (in hours even).
I think it is very misguided to say "LL only" and treat infections first. What about detox pathways? If they are not cleared, you are just inviting trouble.
Also, sorry to target you Keebler, but the magnesium is getting a little old. You post that in response to practically every Lyme question asked and it gets insulting and frustrating.
I've been on this site for 9 months now, of course I am on magnesium! I take most of stuff often mentioned here for support etc.
I appreciate all your effort on this site, but I must say your approach is a little overbearing and sometimes unhelpful for the problem at hand.
Ok I've said my piece.
Posted by Keebler (Member # 12673) on :
- I would never suggest waiting until lyme & all are in remission to address other things. It's just how & when those other things are addressed and by whom that can either make or break us, literally.
LL only to first ASSESS. That's my main point. To sift out what's what and "direct traffic" to others if needed.
That is very different than waiting to finish treatment. However, often, with lyme treatment (and with other TBD, heavy metals, parasites - liver and adrenal support) . . . many symptoms can resolve.
Going back to being assessed, it's best to have the most educated doctor possible about all / anything that can be in the picture.
Why? If an "Addison's patient" is given steroids (as is common) and they have lyme, it could be a fatal mistake IF the lyme is not also addressed at the same time.
I'm not saying to wait until lyme is done being treated, only to get the most educated doctor for assessment so as to best THEN direct the patient to other specialist if needed,
and if so, then to specialists who know something about lyme so that treatment for other things will not put a patient at great risk, but that treatment can work together with the overall approach.
Many here, went to specialist after specialist who should have been able to help. Many have been misdiagnosed with all kinds of things and given treatments that put our lives in jeopardy because lyme (or other TBD) not taken into consideration.
For any chiropractic adjustment, a person with lyme should NEVER have their neck or spine suddenly twisted as is common with many neck adjustments.
Most who do adjustments would not know that unless they know something about lyme or have a direct professional relationship to a LL doctor who can be sure when referrals are made that patients will be safely treated.
There are a couple gentle methods that are okay with lyme. Upledger is one of those.
There are other considerations as to which came first, the chicken or the egg but also concerns about which treatments need to be done differently if a person has lyme or other TBD.
If being treated for anemia, first, babesia should be considered. Otherwise, treating for anemia can pose problems if all is not considered.
STEROIDS (often given for a variety of "autoimmune" conditions) are a huge concern for those with lyme. So, if you do see other specialists who may prescribe those, you just need to know this first:
Re: MOLD issues that may be best addressed before lyme treatment so that lyme treatment has a better chance.
(She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the 2011 & 2012 annual ILADS conferences.) You can get the DVD from www.ilads.org -
Posted by FuzzySlippers (Member # 13658) on :
VV,
So sorry you're feeling bombarded with minutiae.
I don't know of a hospital or treatment center on the East Coast that specializes in Lyme.
What has helped me over the years was to find a good LLMD who was interested in taking a comprehensive approach, trying to look at anything and everything so-to-speak.
Good Lyme docs will be interested in supporting all systems in the body and also treating any problems with the body systems -- regardless of whether those systems are affected by Lyme or not.
In fact, the really good Lyme docs state that it is impossible for a patient (particularly a chronic one) to get well without supporting the entire body. This includes the POTS issue you raised, adrenals, thyroid, blood pressure, coagulation problems, sleep problems, neuropathic problems, immune deficiency problems, detoxing, supplementation, etc. -- the list is actually endless.
As you eluded to, it's sometimes impossible to even be able to tolerate Lyme treatment without treating and supporting the collateral problems. I can share with you that I have alot of collateral problems and at the end of the day, it didn't really matter what caused them, they still needed direct medical treatment/intervention. This was in addition to directly treating the Lyme and Co-infections.
Another thing that can help is if you can possibly find a Lyme friendly primary care doc as well. Together the two docs can write orders for testing, handle most (or a good amount) of treatment needed for the subsidiary (or collateral) damage-type symptoms, and then make recommendations for any medical specialists that might need to be seen -- like a cardiologist, gastro doc, etc.
It's exhausting having to pound the pavement like this when we're so sick. Burn out set in for me very early on from having to see so many doctors to even get diagnosed with Lyme. And it was equally as stressing to have to see more specialists once I began Lyme treatment.
But, again, with a good Lyme doc, an awful lot of the collateral stuff can be diagnosed and treated, and for the issues that the LYme doc isn't comfortable treating, he can help guide you in who to see in order to rule in (or out) collateral problems.
If you're not getting this kind of assistance from your current LLMD, maybe you might want to line up another consultation with an LLMD that is more comprehensive?
We'll never be able to find "LL" specialists in all disciplines -- hence the need for a good, comprehensive approach LLMD to help you navigate through the rest of the medical mire.
Hope this helps.
Blessings.
Posted by VV (Member # 38828) on :
"As you eluded to, it's sometimes impossible to even be able to tolerate Lyme treatment without treating and supporting the collateral problems. I can share with you that I have alot of collateral problems and at the end of the day, it didn't really matter what caused them, they still needed direct medical treatment/intervention."
This is where I believe I am. I need some sort of balance/support to deal with killing the bugs with the subsequent die-off.
I do all of the basic support, detox, diet etc. discussed on this site but there is some missing puzzle piece going on.
Posted by FuzzySlippers (Member # 13658) on :
VV,
This might be of some help to you at this point in your journey.
Linked below are two videos of presentations given by an LLMD who, after decades of treating complex chronic Lyme patients, appreciates the need for a comprehensive approach. He's not the only Lyme doc out there that does it this way -- there are others.
So far I haven't found a doc who will address half of that stuff unless you bring it up, and even then they may shrug their shoulders at it.
Posted by Tammy N. (Member # 26835) on :
Sending you a pm.
Posted by Robin123 (Member # 9197) on :
I think you need an LLMD who's more comprehensive in treatment, as in looking into ALL the aspects of care, not just antibiotics!
They should be bloodtesting you to look at your blood chemistry, they should be supervising not only bug killing/deterence, but also detox, and fortifying.
And no, unfortunately we don't seem to have LL neuros. So that's why the LL docs do more of the work with us.
Posted by Splashi1 (Member # 28173) on :
There actually is a LL Neurologist in MA. I will PM you the info.
Posted by Ellen101 (Member # 35432) on :
quote:Originally posted by Splashi1: There actually is a LL Neurologist in MA. I will PM you the info.
Could you PM me the info as well?
Posted by Ellen101 (Member # 35432) on :
VV, I think I know where you are coming from. I too had an awful time handling Lyme treatment due to profound herxing. There were times the herxng was so severe I was unable to function. Aside from needing to be available to my family I also knew that this assault could not be good for my body. I also was amazed sometimes at the amount of people searching for a herx , and those quick to assume a severe reaction is just that when it could actually be a dangerous side effect or allergic reaction.
I had a good LLNP and went though a yr of non stop abx. Some days I felt like giving up. The pain was horrendous. My LLNP was convinced that yet more treatment was needed, but I knew I had been through enough and it was time for a fresh set of eyes to review things.
I met with a new LLNP who agreed that I may not be dealing with Lyme at all at this point and searched for answers in other areas. Hormonal, digestive, toxic metals etc. The results were very eye opening and at the same time frightening. Problems that had gone unchecked and untreated needed to be addressed.
I think it is extremely important to look beyond Lyme. I feel chronic Lyme has become a business for some unfortunately and at some point you need to step off the merry go round and look elsewhere.
While I feel it is great if you can find a Lyme literate practitioner, this may not be possible in all areas of expertise and perhaps having more than one practitioner work together may be the best approach,
Posted by OtterJ (Member # 30701) on :
Wouldn't it be nice if there were lyme literate internists to direct traffic and get patients to the right lyme literate specialists? ...and monkeys might fly outta my @#*!
Posted by cozynana (Member # 34270) on :
Hopefully, in the near future there will be some place for Lyme patients in need of hospital care that is safe for all of us.
Posted by OtterJ (Member # 30701) on :
What happened to the lyme "lodge" that opened in the upper midwest for lyme patients? They didn't provide direct care, but was a facility that applied for medicaid/care dollars....