Think I have Lyme

[Drew967]

Hey everyone,

I wanted to let you all know what I've been going through and see if anyone can identify. I think I have Lyme disease, and I'm going to schedule an appt with a naturopath tomorrow. I'm really worried, especially since my symptoms appear to be more advanced. Here's the breakdown:

Started with intense arthritis in both wrists, mellowed out and spread to forearms. Had my mind blown as to why this was happening.

For a couple weeks, I just dealt with the pain in my forearms/wrists, and the tingling. I saw a chiropractic, but a cervical MRI showed nothing wrong.

About 3 weeks after the first onset of symptoms, one of my calves had about a 6 hour spasm - the day after, all my symptoms went away for about 3 days, although i was still overall a little out of energy.

The 4th week (this past week), I've been feeling strong flu like symptoms - chills at night, low energy, headache. The other symptoms came back with a vengeance this time. Halfway through the week, I started having memory problems and fatigue a couple hours a day. I was also really thirsty, and peeing constantly (I don't have diabetes). On Friday, I was really struggling to stay on top of my work and think straight. Also started having panic attacks/anxiety. That night, I couldn't sleep because both my calves were spasming, and it was very uncomfortable. I've been having panic attacks throughout the day, and sometimes not thinking clearly. One side of my jaw, especially my teeth, feels numb.

I went to the ER on Saturday night because I was freaking out, but they told me "we don't have lyme here" (I live in Portland, OR), and they sent me home. The research I did says otherwise, although it doesnt seem to be very prevalent around here.

Until I can see my naturopath, does anyone have any advice dealing with symptoms? the muscle cramping, headaches, the mental slowness? I'm going to try taking magnesium supplements and Epsom Salt to see if it helps. Thanks in advance for any advice.

[Elleon_arual]

Hello,

Sorry about your symptoms.  I don't know too much about Lyme but I was just diagnosed with it and have similar symptoms to yours.  I took magnesium supplements and tried Epsom salt baths and nothing worked.  My symptoms have been going on for four months though. Then I found a tick buried in my skin.  

I had EXTREME numbness and pain in my jaw and teeth.  I still do (I start antibiotics today to treat the Lyme).  I'm telling you, I went to every doctor imaginable and no one could figure out anything. My normal blood test for Lyme came back on the high negative and my doctor just "humored" me when I told her I found a tick. Doctors are freaking useless..

I then went to a natural doctor who looked at my live blood under a microscope and said "everything in your blood tells me that it's Lyme".  Then I found the tick and tested positive on the Western Blot test.

You need to find a Lyme literate doctor.  If you read my post in the community, I think it's titled something like Desperate and Need answers, there is a lot of good information there.  

Do everything QUICKLY.  If I had found out I had Lyme four months ago, maybe it wouldn't have gotten so bad.

[cave76]

That thread here on MedHelp is found at
http://www.medhelp.org/posts/Lyme-Disease/In-desperate-need-of-answersplease-help/show/2017482

But, Drew---- since you live in OR, as I do, you will find almost ZERO help about Lyme in this state!

The physicians here are 'warned' to not treat it---- except for the people who come in with a bulls-eye rash (not very many get it) and then they'll be treated with a too low dose of doxycycline and for way too short a time!

Here is part of an article about Lyme disease in OR.

"Lyme Disease in Oregon

Oregon ranks as one of the worst states in the nation to get help for Lyme disease. Over one-fourth of the state’s population is enrolled in HMO’s and standards of care seem to be determined by these entities, Kaiser in particular, and their financial influence on the state’s medical university, Oregon Health Sciences University (OHSU). The Oregon Board of Medical Examiners, which includes two members who are not even doctors or in any way involved in medicine, appears to be compliant to their wishes."

The full article can be found at
http://lyme.kaiserpapers.org/oregon.html

You CAN get some help from naturopathic doctors--- but they may not be covered by insurance, if you have any. And as has been found by many people----- a naturopath, unless s/he is an MD also, may not prescribe long term antibiotics, which is the ONLY way I'd suggest treating this serious disease.

I'm not a doctor but an experienced patient and have read more about this disease than many doctors. :) I certainly have read more patient stories than doctors do and maybe more articles.

Please listen to Elleon----- the faster you get on antibiotics the better, in my opinion and the opinion of many people here. However, in your case, living in OR as you do----- the closest help will be in Humboldt County in CA.

Just so I'm not misunderstood----- there ARE a few naturopaths in OR or WA that do treat Lyme with antibiotics---- the ones that are also an MD.
(OR is a strange state and the naturopath/MD licencing is one I still haven't figured out! LOL)

The trick is---- to tell them your preference for antibiotics. If they insist on you trying their pet panaceas then politely reiterate your request. If s/he still won't----- than it may be prudent to find another naturopath.

BTW---- taking Epson salts baths certainly can't hurt you and may help you feel better for a while----- but they certainly won't help cure Lyme!

[mojogal]

Every state has Lyme including your state and Texas where I lived when my symptoms were the worst and was told Lyme doesn't exist.

To alleve your symptoms in addition to the Epsom salt baths you could try activated charcoal pills. Take them 3 hours before or after any other medications you may be taking. This helped me at times.

We usually tell people to contact ILADS.org and ask them for an LLMD near where you live. My only concern is with your naturopath. Is he/she able to prescribe antibiotics? Long term antibiotics are needed to get rid of the Lyme and an co-infections you may have. Ask the naturopath if they can send your blood work to IgeneX. This lab is the best in the country when it comes to Lyme. I take a combination of herbs and antibiotics but I don't think I would be comfortable with an all herb protocol. Others may feel differently.

The longer you wait, the worse it gets. I am a good example. Being bit 20 years ago but not diagnosed until 2 years ago, I now have some permanent nerve damage.

Please let's us know what other questions you may have.

[cave76]

Please read this post about referrals from ILADS.
http://www.medhelp.org/posts/Lyme-Disease/Referrals-for-a-doctor-from-ILADS-and-LDA/show/2017609#post_9527736

A referral from ILADS is fraught with problems even if you live in a state that does recognize Lyme disease.

The problem with Oregon is there's no doctor in that state that will treat Lyme according to ILADS guidelines.

Or if there is and s//he has eluded my and others exhaustive searches would you please p.m. me or, even better post it here on the board.

Drew, if you're able and willing to travel to CA I can give you the names of several good doctors there.

[Drew967]

Thanks for the responses everyone. I went to my PCP today, and didn't get anywhere. He chalked up my symptoms to "hyperventalation", and gave me a "chill pill" (Lorazepam). He at least agreed to order some bloodwork - so far, only 2 of the test results have come in. He hasn't reached out to talk them through with me yet, but so far to me it looks like the most alarming result is that my Bilirubin levels are 2x higher than the max, along with elevated Albumin levels. I'm not sure what this means... maybe something else is wrong with me as well?

Even more frightening to me is that I've lost 7 pounds since I was there a month ago.

I tried to schedule an appointment with a naturopath in my area who supposedly specializes in Lyme, but she is booked a month out. I talked to a friend, who passed on some info about a Lyme specialist in Seattle, who offers skype consultations. I could get an appointment with him wednesday this week (treatlyme.net is his website). Trying to decide if i should act on that - any thoughts? Or should I just wait it out a little longer? Thanks so much for the advice! It helps to have people who will actually listen to my concerns.

[mojogal]

I know that Dr in Seattle if his name is Dr R.  I would go to him for your first consult. I am actually now following his plan which you can get free on his website. He gave advice if you were stuck getting cured from Barts,which I am. I am getting his specified abx from my LLMD on Friday. I also followed his recipe for fatigue. He chose some supplements and although I have only been on them a few days, I can feel some energy coming back. I was also able to get off ambien, using his sleep suggestions. That is a big deal for me.

I know this website says you can name LLMD but every other group I have been in, and I am in a lot of support groups, say not to mention names on the forum but rather on a PM. So if anyone wants names, please send me a PM.

[cave76]

Dr. Marty Ross in Seattle WA has a large Internet presence and is very easy to find there and on YouTube.

I think that getting on antibiotics as soon as possible is the best course for you to follow. If  Dr  Ross will rx doxy at 400 mg a day then that's a great start. You might have to be assertive to bypass the supplements and herbs but if he's a good doctor he should have no problem with that. (You can always add them later, as needed.)

His treatment manual is free. I looked at it and he does rx doxy at 400 mg a day. Of course it doesn't say for how long----- but he might be willing to continue that regimen if symptoms aren't resolved.

But the rest of his treatment manual is filled with protocols that often have no basis in science for the treatment of Lyme but can be useful as adjuncts.

Compare Dr. Ross' treatment with the ILADS one at http://www.ilads.org/files/ILADS_Guidelines.pdf

His treatment for Bartonella looks to be about the same as those given by ILADS.

At first glance he looks to be mostly  interested in treating Lyme via alternative methods. But I'm going to guess that if the patient politely insists on antibiotics only he would be compliant. I'm not saying that his treatment suggestions are useless----- for instance sleep is very important for people who are ill.

[cave76]

About your bilirubin and high albumin tests: Since I have no other information about your medical history  (and I don't need to know) it would be hard to say what's causing that.

But it IS important that you get in touch with your doctor about those elevated tests. They MIGHT mean liver problems which MIGHT be serious or not. If you've ever been a heavy drinker (I do NOT need to know that) that could be a reason

It also could mean that you have Gilbert's disease which isn't rare and usually means nothing serious.

But PLEASE get in touch with your doctor about those high test results.

[cave76]

Weight loss: You've lost a fair amount but not a tremendous amount. If that weight loss continues you need to ask your doctor about that.

[Elleon_arual]

Hello!

When I went to the ER the first time for my symptoms, my liver enzymes were really elevated. Not my bilirubin but my other enzymes.  My doctor waited a week and checked them again and they were still elevated.  I was sent to a gastroenterologist and had MORE blood work. Before I got that blood work, I took myself off all supplements/herbs/vitamins I was taking.  These things (although natural) can cause elevated liver levels.  When I got my blood work, my levels were pretty much back to normal. So I suggest if you are taking anything, get off of it.

However, when my levels went back to normal was about the time my symptoms from Lyme let up a little bit. I did read somewhere, and I don't remember where, (and I'm not saying it's definite) but that Lyme could elevate your liver levels.

BUT since antibiotics usually effect your liver, I would make sure that's alright before you start taking any kind of supplements/herbs/antibiotics.

.

[cave76]

Natural Does Not Mean Safe

Herbal supplements are unregulated, overhyped, and potentially deadly. By Geoffrey Kabat "Between 1994 and 2008, the number of dietary supplement products on the market increased from 4,000 to 75,000. In the first 10 months of 2008, the FDA received nearly 600 reports of serious adverse events (including hospitalization, disability, and death) from these products and 350 reports of moderate or mild adverse events. However, the FDA believes that these reports are drastically underreported and estimates that the annual number of all adverse events is 50,000.

http://www.skepdic.com/natural.html

http://www.slate.com/articles/health_and_science/medical_examiner/2012/11/herbal_supplement_dangers_fda_does_not_regulate_supplements_and_they_can.html

http://rationalwiki.org/wiki/List_of_medicinal_plants#Individual_herbs

[mojogal]

I am not a believer in natural herbs at the start of Lyme. I believe in taking abx. I know many people who disagree with me and say they have gotten cured from herbs alone.

I am some where in the middle taking herbs as a supplement to my abx. I do feel that these herbs are helping me.

I would encourage anyone starting an herbal protocol to do a lot of research and buy from well respected companies.

[cave76]

Could you give us a list of well respected companies?

[mojogal]

Here are a few companies that have pharmaceutical grade supplements
Dr Zhang's Herbs
NOW
Thorne
Nutrigold

[Emily_MHManager]

Hi everyone -

I see that Drew hasn't posted again, but I wanted to make a couple of points.

Until you get your full results from your blood work, please be very careful with taking ANYTHING right now, as some of your levels are really high. Results like this could indicate a lot of things other than Lyme, and some are potentially very serious.

I hope by now you have followed up with your doctor and gotten some results, and are moving forward with a diagnosis and/or treatment plan.

In the meantime, let's all be really careful with suggesting ANYTHING to someone without a diagnosis, including natural supplements.

You can also provide doctor names here, so long as you are not saying anything negative.

Thanks,

Emily

[JackieCalifornia]

Emily,  you say above:

"You can also provide doctor names here, so long as you are not saying anything negative."

fyi, those of us in the Lyme world have a general policy of NOT naming doctors in public, because in quite a few states, MDs who are identified as treating Lyme disease in a way that runs contrary to the standards set by the Infectious Disease Society of America (IDSA) are too often brought up before local and state medical boards for diagnosing and treating Lyme in a manner more aggressive than the IDSA approach.

Some states have 'freedom of conscience' laws which permit MDs to practice as they see fit, but many states require MDs to practice according to specific approaches for diagnosis and treatment, on the theory that, for example, all is known that needs to be known about Lyme disease, and a few weeks of doxycycline will fix you right up; any remaining symptoms or suffering are not due to an incompletely or inadequately treated infection, but are instead the immune system's reaction to a now-vanished illness.

Unfortunately, politics has taken hold within the IDSA, and in some states, those suffering from Lyme are doomed to continue in that condition.  Lyme is not an inconsequential disease, and it can even lead to death from, for example, cardiac involvement.  Even when not risking life, Lyme often impairs significantly the ability to function day to day in the simplest of tasks, let along taking care of family and working.

On this site, we have an informal policy of NOT naming in public those MDs who risk their livelihoods to diagnose and treat us more aggressively, because if the Lyme specialists are cowed into silence, we will have no one to treat us.

There is a serious split in the medical community that is not anywhere near remedied, and we cannot risk losing the brave MDs who treat us as they, the MDs, believe is appropriate.  I had Lyme and was virtually non-functioning in my daily life.  I lost my job and was largely unable to care for my family.  If I had not found a Lyme specialist who diagnosed me with Lyme and another infection also often carried by the Lyme ticks, I would not have gotten well.

The toll that Lyme takes on daily life is enormous, and we need all the Lyme specialists we can find.  On behalf of all of us who have or have had or will have Lyme, please understand that we discourage naming Lyme specialists in the open here for a very good reason.  We may share the names of our Lyme docs in private messages, but not in the open.

Yes, this is totally unlike any other medical situation in the country, but it is what it is, at least for the foreseeable future, until the senior MDs who have staked their reputations on Lyme being 'hard to get and easy to cure' have retired and their successors are able to think for themselves.

There is an excellent documentary called 'Under Our Skin' that is available online, I believe, which explains what life is often like for those of us with Lyme. If you are interested, I recommend it.  We do not all end up as ill as some of those shown in the film, but we are all at some level debilitated and unable to participate in family and work life.

Thank you for your understanding.

[cave76]

Drew----- Just checking up to see how you're doing since we  haven't heard back from you. Have you had that very high bilirubin and albumin checked out by a doctor (MD) yet?

I think that should be of prime importance because it might be serious.

About Dr. Marty Ross---- I checked further into his practice and his Skype consultations. They aren't inexpensive.

But, for someone living in OR and with no or very little access to a doctor who will treat Lyme disease, I think you should check a bit further before you pay that fee.

His One-on-One Skype consultations can be worth it for many people. But, as his web site states, he will give a treatment plan FOR USE IN CONJUNCTION WITH that person's doctor.

Well, that pretty much leaves out most of Lymies in OR because we can't get a doctor who will treat us. (grin)

But if you DO have a naturopath who will treat with long term abx---- then Dr. Ross' and his treatment plan may be helpful---AS LONG AS IT'S WITH ANTIBIOTICS.

But first, I hope you're being seen by a doctor for your high bilirubin etc.

[mojogal]

I agree its been instilled in my head not to name doctors on forums and I can't just do it because of all the politics causing them problems.

[cave76]

"I agree its been instilled in my head not to name doctors on forums and I can't just do it because of all the politics causing them problems."

Mojo,
I respect your decision to not post doctor's names.

I know that it's been instilled in people's heads to not post Lyme doctors names. If a doctor has expressly asked to not have his name put out publicly, that's something I'd never do.

If the doctor is truly 'hidden' and flies beneath the radar all the time then that's a good reason to not put his/her name out there.

But when  simple Google search of "Lyme doctor in XXX (state)" brings up dozens of hits-----obviously that doctor doesn't mind.

[JackieCalifornia]

Actually, the doc might mind a great deal, but has been outed accidentally or on websites where posters are not so cautious -- and once outed on the internet, it's there forever.

It's hard enough to find an LLMD in some states without giving the anti-LLMD troops a roadmap.  Just sayin'.

I personally will continue to stay on the side of caution, in honor of the docs who follow their consciences and treat Lyme as the beast that it is.

[Drew967]

Hey everyone,

Thanks again for all the help. I'm still waiting on my results from the Western Blot (blood drawn last Thursday). I'm still having strange symptoms, which now includes my right arm and shoulder feeling a little weak. I'm hoping we can get this figured out soon, especially if it does not turn out to be lyme.

As for the high bilirubin and albium, my doctor did not seem concerned - he said I might have Gilbert's Syndrome, which means I just produce higher levels of bilirubin naturally. I'll keep you all updated when I find out more info.

[cave76]

Drew--- thanks for getting back to us.

I'd posted that that might be a reason for your high bilirubin results---- and your  doctor seems to think so too. I just wonder why he believes that? Perhaps all your previous CBC tests have come back high---- which might lead him to think that.  Do you keep copies of all your tests (I hope so). If you do just a quick look back in them would perhaps show several years worth of the bilirubin test getting slowly higher and higher---- which may point to Gilberts disease----- or an untended liver problem.

I wonder how it can be proven that it's Gilberts and not actual high bilirubin. A question for your doctor----- for I sure don't know! He may have already satisfied any concern he might have had.

Just found this---- the differential dx for Gilbert's
http://emedicine.medscape.com/article/178841-overview

Your doctor may have already performed a diff. dx. for Gilbert's, I hope

"Gilbert syndrome

As a rule, Gilbert syndrome can be diagnosed by a thorough history and physical examination and confirmed by standard blood tests. Laboratory results include the following:

Unconjugated hyperbilirubinemia noted on several occasions
Normal results from a complete blood count (CBC), reticulocyte count, and blood smear
Normal liver function test (LFT) results
An absence of other disease processes

Specialized tests that have occasionally been used to confirm a diagnosis of Gilbert syndrome include the following:

Fasting test
Nicotinic acid test
Phenobarbital test
Radiolabeled chromium test
Thin-layer chromatography
Drug clearance test
Polymerase chain reaction (PCR) assay
Percutaneous liver biopsy - Very rarely performed"
******************************

[JackieCalifornia]

That's a good approach -- staying as mellow as possible till there's more data.  Take care, keep us posted --

[mojogal]

I had muscle weakness when my Lyme came out big time. I was misdiagnosed with MS just to give you a heads up that Lyme mimics a lot of diseases.

Keep us updated.