Just looking for some support...this is a nightmare

[Elleon_arual]

Hello.

I am freaking out.  This is all a huge nightmare.

Every day my husband is showing more and more signs/symptoms of Lyme. We are going to get him tested through IgeneX on Tuesday but I want him to get treated with meds before the results come back as he is having heart problems now. My LLMD started treating me a few days after I saw him (well his assistant) because the normal western blot through my insurance came back with band 41 positive and he said he's seen this enough to know I had it. I then did the IgeneX WB to be on the safe side. But how can they rationalize to my insurance to pay for a normal western blot for my husband since it is dead of winter and supposedly no ticks are around now?

My husband is complaining of anxiety/panic and racing heart at night.  His blood pressure has also been pretty high since he started having symptoms.  He said he feels weak too.

I'm so scared. And I feel really guilty because this is all my fault.  I just fear that the two of us are just going to drop dead any second.

I cannot handle the stress. We both work full time and if either of us need some time off, we will not be able to afford our bills.

I am still having the air hunger and flaring of Babs symptoms. I am terrified my LLMD won't start treating me for it when I see him Tuesday.

I just want this all to be over with.

[Elleon_arual]

And I was never officially tested for babs. I just have most of the symptoms, which have been my main symptoms throughout this whole thing.

I also had a pretty big herx on some herbals I had been taking for babs. Obviously, they didn't completely work.  

My LLMD has also mentioned that my symptoms seem to be Babs but why isn't he treating me? And I hope he doesn't want me to pay a ridiculous amount of money for co-infection testing when I know that they are not reliable at all.

[cave76]

I'm sorry that your husband, also, might have Lyme disease and I'm glad he's getting tested by Ignenex.

About :
"But how can they rationalize to my insurance to pay for a normal western blot for my husband since it is dead of winter and supposedly no ticks are around now?"

I'm not sure who the 'they' are in your sentence.
Or what you mean by a 'normal' WB.

[cave76]

I'm sorry that your husband, also, might have Lyme disease and I'm glad he's getting tested by Ignenex.

About :
"But how can they rationalize to my insurance to pay for a normal western blot for my husband since it is dead of winter and supposedly no ticks are around now?"

I'm not sure who the 'they' are in your sentence.
Or what you mean by a 'normal' WB.

But this might help a bit. I wrote a previous post (did you read it?) about two studies done in Upper New York.

http://www.medhelp.org/posts/Lyme-Disease/Will-snow-and-winter-conditions-kill-ticks/show/2085610

I can furnish the link to that paper via P.M. if you want.

Short answer? Cold weather does NOT kill all ticks.

[mojogal]

So sorry your husband is showing symptoms of Lyme. I got Congestive heart Failure from Lyme and I also get irregular heart beats. It's very scary. He may need to see a cardiologist.

Regarding your insurance, most LLMD don't put Lyme down as the diagnoses unless you are CDC positive. They may put pain, fibromyalgia or something similar.

Your Doctor should be treating your Babs. If not you can either change docs (not so easy)  or go on the herbal remedy, artemesian.

Keep us posted. Good luck

[Elleon_arual]

Hey cave,

Sorry, should have been more specific.  I say normal western blot as in it's not the IgeneX Western Blot.

When my LLMD drew blood for one, my insurance gave them a hard time about paying for it because my ELISA came back negative.  I meant "they" as in my LLMD office, they were back and forth on the phone with my insurance to get them to pay for the Western Blot.

Then my LLMD wanted to be sure I had it since only 1 band came back on the Western blot so he had me pay for an IgeneX WB which came back very positive.

[Elleon_arual]

Thanks for the reply.

How long did you have Lyme before treatment?

I am scared about heart issues. I have them as well as my husband.  It's mostly racing heart and pounding heart feelings.  

I didn't know that the doc will probably put down something else for the reason for the meds. That makes me feel a little better.

Have you had any experience with that artemesian? I have read about it but am a little afraid to try it since I don't know how much to start with.

[mojogal]

I had lyme 22 years before it was correctly diagnosed. It had done a lot of damage by the time I started treatment 2 years ago.

I have not personally had experience with artemisia because I was cured of Babs while on oral medications. Knock wood. I am on a Chinese herbal protocol now.

[Elleon_arual]

Thanks for getting back to me.

So sorry you had to go through it for that long with no diagnosis.

What kind of Chinese herbal protocol do you do now? I have been going to a Chinese woman trained in traditional Chinese medicine however she doesn't believe in Lyme so doesn't know how to treat me. LOL. I just stopped going.

[ngageme]

You might want to consider looking at various herbal protocols. Just Google Buhner lyme protocol amongst many that are out there.

[ngageme]

You would have to research a lot of protocols developed by MD's and Naturopaths by yourself.

Your mileage will vary. I have used quite a few herbs and some of them helped, where as other ones did not.

I also alternated herbs and took 1-2 week breaks between them.

After I year of self-treatment, I feel marginally better but not more than 50% improved.

Also, it is important to udnerstand that herbs are not as harmful as some people think they are.

I would consult a Naturopath, or MD who is versed (or at least eager to learn) in herbal protocols.

[mojogal]

I am using Dr B mentioned above. On Facebook you can friend him and he will answer any questions that you have. At first I was doing Dr Z's protocol, all Chinese herbs but after reading the new book by Dr Horowitz I decided to switch.

That book is excellent for all that think they may have Lyme and co-'s.

[Elleon_arual]

Hello! I am at the ER with my husband. He started feeling very weak and weird with dizziness and pain in his neck. He wanted to rule out everything else even though he knows its probably lyme.

We convinced them to run a lyme test just to see although i'm sure it'll come back negative. We made up a story that he had been in the woods. Oops!.  Surprisingly the doc said that you don't need a bulls eye rash to have lyme and that it's becoming a huge epidemic in this area.

But then he said "2 weeks of antibiotics and you'll be fine" Ha!

We are waiting for test results and my husband is feeling better now.

[cave76]

"But then he said "2 weeks of antibiotics and you'll be fine" Ha! "

Well, you, now, know better. Thank goodness. But how to get more?

"We are waiting for test results and my husband is feeling better now."

For me--- it's always better to do SOMETHING! (grin) And maybe it isn't Lyme, but you know better than to believe the  test completely, don't you?

Did they try to see if anything else, other than Lyme, popped up for your husband?

(And it been a huge epidemic in your area for a couple of decades!!! Not just "becoming".  But at least he acknowledged something!)

[Elleon_arual]

They sent out for a western blot surprisingly so we need to wait on the results.

All his blood work came back perfect of course. His EKG came back fine and they had him hooked to a heart monitor for 5 hours.

But his heart mostly bothers him when he's trying to go to bed. It starts pounding really hard. He's sleeping right now and his whole body is moving with his heart beat.

The doc mentioned a holter monitor but then never gave him one.

We are going to my llmd on tuesday. I am going to BEG him to treat him. Im terrified for him to wait 3 weeks for the IgeneX test to come back.

He has been taking A LOT of supplements like cayenne and oil of oregano to help with his blood pressure since its been high. I feel like it sort of suppressed the lyme and Babesia came roaring because all the symptoms hes having seem like babs.

Hes having weird heart beats, air hunger, sweats, and a couple bruises on his legs. All symptoms i have too.

[mojogal]

The western blots used in mainstream labs are not very reliable. Have your LLMD test for Lyme and co-infections.

Good luck!

[cave76]

To ditto what mojo said:
If the WB was 'mainstream' (which most doctors call the not-so-good WB) then the test results won't actually tell you anything about Lyme.

You said you'll be seeing your llmd on Tues and he can do the WB via Igenex. Your llmd  may not treat without a test result. Most won't, even though Lyme IS a clinical dx.

If he's been using a (quote) 'a LOT of supplements' (unquote) then I'd also look into those as possible contributors to his symptoms. Before I knew I actually  had Lyme but was having some symptoms, I went to an acupuncturist who also told naive me to 'take these Chinese herbs'. And naive me did! WHOO---- what a mistake! My heart went wild. I stopped those herbs and the heart stuff went away.

I'm not going to tell you that's what may be happening to your husband---- but  it's certainly worth looking into.
(BTW, it's not JUST Chinese herbs I'm talking about!)

I see that you listed oil of oregano (for husband). There may be some evidence that it can raise blood pressure. Most of the sites I found are from people/stores that are heavily invested in selling the benefits of oil of oregano.

It sounds as if he should see a cardiac doctor, if he hasn't already.

[Ricobord]

Sorry to hear your husband is having so many Lyme symptoms.  Whether he gets antibiotics in the immediate future or not, I encourage you to pass on the idea of taking a beta blocker.

I know some people aren't big on beta blockers, but I have to say a low dose has been very helpful for me.  I had terrible tachycardia.  My resting rate was often 100+.  Going upstairs sent it to 120.  The most terrifying time was in the middle of the night when I woke up because my heart was pounding and racing so hard, it was shaking the bed. (Not kidding!)  At that moment, it was 155.

After that, my GP prescribed me Metoprolol.  It brought my resting heart rate down into the 90's and the worst spike I had after that was about 110. Of course I wasn't exerting myself much, but at least there weren't any more night time incidents.

I hope your husband gets a clear diagnosis soon.