No sleep Never-ever, for over 45 yrs., 24/7

[Lymehunter]

My wife was diagnosed with Lyme, w/coinfections, after 36 years of hell and
no valid diagnosis or treatment from the health care community.  She was seen
by many "shrinks" before diagnosis, and one Lyme "shrink" after diagnosis.

She was treated with 6 months of IV Rochepin and also 2 1/2 years by a top
Lyme Medical Doctor....who dismissed her, because she was still not sleeping,
and he was afraid of the government; because she wasn't getting better.

My wife only gets 2 to 5 min cat-naps, with violent awaking's sometimes.
She was hospitalized, so the nurses could check on her 24/7...and proved to them
she didn't sleep.....everyone had a hard time explaining that one away.
She was in a Sleep Clinic.......and got no help, or no reason why she can't sleep.

My wife also has all the muscle/joint pain...one knee replacement, etc., connected
with Lyme.....also 3 Ortho. knee surgeries.
She has seen 3 different naturalist, muscle-testing doctors, with no help.

Does anyone have a similar experience......and have you gotten any VALID
help??

God bless all and Have a nice day !!!

Doug from PA

[mojogal]

I have had Lyme and co-infections over 20 years. It affected many organs in my body. I developed adrenal fatigue. Which deeply affects my ability to sleep. I am not cured yet but working on different things. I became hypothyroid which is part of the adrenal fatigue but it is much more. One needs to take tests for cortisol levels throughout the day. A naturalist would be the one to ask about this.

[JackieCalifornia]

Welcome to MedHelp Lyme --

We can certainly understand at least a part of what you and your wife have gone through -- and for so terribly long.  I am very sorry to hear about it.

There is a split in the medical community over Lyme and how serious it is or is not, how to diagnose it, and how to treat it.  It is very difficult to parse those who truly understand Lyme from those who only think they do, and therein lies the problem.  Medicine is slow to change its ways, even when speed is warranted.  You may remember the impact of AIDS some years ago, and the confusion that reigned for a time as to who could get it ("only if you are gay or Haitian"); a similar level of confusion exists regarding Lyme, but AIDS and Lyme are not in anyway related or even similar, tho the poor response by the medical community in each has similarities.  

All MDs/naturopaths etc. who treat Lyme and its co-infections believe they truly understand and are doing the right thing, and the first and most crucial step is to find a doc who TRULY understands Lyme.  

The US government's Centers for Disease Control (CDC) and the Infectious Disease Society of America (IDSA) (a voluntary group for MDs who practice in the field of infectious disease) have locked down their now-outdated views of Lyme and other infections the same ticks often carry.  The senior people in both organizations who originally made the determination that Lyme was apparently hard to get and easy to cure are still around in some cases, and their acolytes have risen in the ranks to perpetuate the willful blindness of the senior MDs.  That is likely what you have been encountering.

Good news:  the cavalry is here, and its name is ILADS (International Lyme and Associated Diseases Society), a voluntary group for MDs who think broader thoughts about infectious diseases including Lyme and other infections often carried by the same ticks.  After 20 clueless MDs, I found my way to an ILADS-member MD who properly diagnosed and treated me some 7 years ago, and I continue to be quite well today.  

Unfortunately, the CDC and IDSA still hold sway over much of the medical profession with regard to Lyme, but ILADS [pron. EYE-lads] is a hearty group, and my money is on them.

Because the IDSA (the non-believers) claim position as the superior group, there are MDs who bow down to the IDSA credo that Lyme is rare, hard to get, and easy to cure with a few weeks of doxycycline.  Well, it's not rare anymore, it's easy to get (ticks are everywhere), and doxycycline is not active against the extra diseases (co-infections) that the 'Lyme' ticks also carry about half the time ... nor is 'doxy' effective except very quickly after the initial infection occurs.

It is unfortunate that the initial treating MD is running scared from the CDC/IDSA and perhaps the local/state medical boards, and that is exactly how messed up the whole Lyme situation is.  So let's find you another doc.

I did a quick search online for

                 --- sunbury PA lyme disease ---

and wow there more hits than I expected.  This is good, even if the 'non-believers' are generally running the show.  It means there is awareness.  I would suggest that you email to:

                --- contact   [at]    ILADS  [dot]   org  -----

and ask for names of ILADS member MDs who are within [50] miles of your location -- or go wider and have more of a selection, if you find that 50 miles is not a sufficiently broad net.  There is no guarantee that an ILADS member doc is top of the line, so keep your antennae up.

Also, search online for other city names that you can easily get to.  After initial diagnosis and establishment on treatment, my appointments were about once a month for the better part of a year, but everyone is different.

Generally speaking, also search for something like

                    --- pennsylvania lyme disease association ---

There are many hits for that search, and the patient-oriented groups are most likely to have the best scoop on who the good Lyme docs are.

The first step is finding an LLMD you are comfortable with (google the potential docs' names and see what comes up, but know that many Lyme patients do not say much on line about their docs in order to shield the docs from harassment by the non-believing authorities e.g. medical boards).

If you don't like the first doc, go to another.  You've already had some unpleasant encounters including a doc who was running scared of the 'medical police', but don't let that deter you.  If the politics are THAT bad in PA, go to a neighboring state.  

You ask if anyone has gotten 'valid help' for Lyme:  yes, many have, including me.  I am now 7+ years Lyme-free, as is another family member.  It's a matter of finding the right doc.  Keep us posted and *don't give up!*  

If you are interested, you can watch an online video documentary called 'Under Our Skin' -- available on YouTube through your computer.  I find it a little sensationalistic, but not terribly so.  Just don't be frightened by anything you see in it -- your wife is not likely to get any worse that she is right now, so take heart.

Also, ILADS has posted on its website various materials about Lyme diagnosis and treatment, including Dr Burrascano's treatment guidelines, which are a bit dated now perhaps, but the philosophy remains the same.

Let us know how we can help, and please let us know how things go!  

Best wishes to you both --