I've requested an appointment numerous times and have one for January. Now that I am not on IV and only need to go in once a month, I believe that I am not a "money maker" for this clinic. I hate to be so negative, but my husband's father is an OBGYN and he didn't have his nurses deliver babies or operate for him!

I still am not better and my issues are not being addressed. Of course the nurse is not to blame, however, now I got an email from my ex-husband who said that a nurse from this clinic lives by him and she said that they have never had anyone cured from Lymes Disease - something they assured me they had.

Finally saw my internist who was not happy at all since he was the one who referred me to this LLMD. I said that I know I'm not a cash cow for them anymore and he said, "yes, but you're a human being." Well said - wish he were LL.

Also, last year I asked if I were tested for co-infections and the dr. said he was sorry that they didn't test for it, but because I will be on so many different antibiotics that they will catch any co-infection. However, I have had bad reactions (gallstones) to many antibiotics, and I can assure you that no one is checking to see if the antibiotics to treat Babesia or Ech. have been given to me.
Anyone else with these same complaints???

HELP!!
grace
 

Bless You,

Pam
 

I don't have exact answers for you, but I have learned in the last 18 months of LD treatment that LD co-infections cannot be ignored.

I've learned so much on Lymenet just since July.

It's like peeling off the layers of an onion. Some symptoms of co-infections don't become obvious until LD is initially treated.

My shortness of breath or easily getting winded did not go away with LD treatment.

But I was in so much head pain, that my LLMD treated me for LD first just to get me comfortable and not going out of my head in pain.

The co-infection symptoms overlap with the LD symptoms and you can't tell which is causing what symptom. It takes a long time to figure this out.

Many LLMDS will test, but they know the co-infection tests are even more unreliable than the regular LD tests.

What's is astounding to me is that we don't even have lab tests for every strain of the co-infections. They don't exist YET.

So some LLMDs will treat based on symptoms even with a negative test.

Babesia is not even treated with ABX because it is a protozoan (parasite). As I'm sure you know it's treated with Mepron, an anti-malarial.

Zithromax is added to the Mepron to prevent resistance to the Mepron or relapse and continue treating LD at the same time.

Besides, many co-infections are sub-clinical. They're right below the radar.

And unless you're acutely ill with a specific co-infection & in the hospital, more than likely most LD patients never have every symptom listed in the textbooks.

You may just have 1 or 2 symptoms & it may be very, very mild. But then you get on Mepron & Zithromax and have a huge herx on the 5th day of treatment-------you got Babs.

Prior to treatment, my Bowen test for Babs was negative.

I had shortness of breath & petechiae on my upper body (i.e. those red pin point dots)& a fine head tremor.

In retrospect, they detected bood in my urinalysis-------which I never saw. My LLMD also asked me if I bruised easily & I did.

Here's what I try to tell people when they're wondering about Babesia:

The following text is taken from Lyme Borrelia Out-Reach Founcation, Inc.:

"Dr. B. talked quite a bit about piroplasms. There are 13, and the only one that has a name is babesiosis.

Interestingly, at least 90% of his chronic Lyme patients have tested positive for babesiosis.

In fact, he said they are now questioning anyone who does NOT test positive, still being suspicous that they may have it!!!

It commonly causes brain dysfunction and headaches, so he said to watchout for the arthritic symptoms clearing (lyme), but the other symptoms persisting.

Suspect babesia! Three things he pointed out about babesiosis.

1. much more common than originally thought
2. high fever is rare
3. becomes chronic when lyme is chronic

An interesting thing is that babesia hangs out in spinal fluid, which is odd considering that they are blood parasites!"

Found at: http://www.angelfire.com/ny/lymedisease/fdn.html

This is all so interesting to me. One person on the board said it took 8 rounds of Mepron/Zith to get rid of the depression.

Babesiosis can cause elevated reticulocyte count and increased red blood cell width distribution (RWD)------but it may not necessarily show up on your blood work. Yet you may still have Babesia.

I'm sure others more experienced will visit & have some good advice for you.

The hard part is convincing your LLMD to treat for Babs anyway.

Then there is Erlichiosis. Doxycycline usually takes care of that.

But Bartonella which wreaks havoc with the central nervous system & neuropsychiatric problems has to be treated with different antbiotics. One example is Doxy & Rifampin, but there are other regimens.

Here is Melanie's superb link to all the co-infections.

http://flash.lymenet.org/ubb/Forum1/HTML/028759.html

I know many LLMDs take co-infections seriously, but I see some that don't.

I do not understand that at all. You will not recover from LD if you still have co-infections.

Babesia gets into your bone marrow. You may be mildly anemic with it. No wonder we're tired.

There are tests that measure oxygen content in the blood & that would reveal a lot about what's going on in the Red Blood Cells where Babs hides out. It also parasitizes LD within the red blood cell.

Have you been tested for mycoplasma fermantans or any mycoplasmas?

Then there is viruses. Rx Amantadine is anti-viral & will also help the macrolides absorb better.

Yeast can be present even if you don't exhibit overt symptoms. It can make you very tired. It causes many of the same symptoms of LD.

Go on a week of Diflucan 200 mg daily and see if you have any aches or pains. The fatigue & aches or pains could be caused by yeast.

It's very hard to get a traditional physician to treat you for yeast unless you have a mushroom growing out your ear.

That's why the LLMD should treat this aggressviely, too. Yeast is very insidious. You think your left-over symptoms are caused by LD, but it could be yeast.

Anyway, I hope others will visit and explain their point of view. This is all my opinion.

I only wish your LLMD would agree & get aggressive with your treatment.

I just want to make sure nothing is missed in treating you, so you can go on and get completely well.

Best Wishes,
Jan

[This message has been edited by RECIPEGIRL (edited 29 October 2004).]
 

I am going back on Monday for my second appointment. I also saw a nurse practitioner, but she did a complete workup on me. I was there for five hours, which also included extensive blood work, 16 vials of blood were drawn.

I was notified my general blood work appeared within normal range but they had detected babesia, although a low titer.

I seem to be going downhill which worries me. They put me on biaxin XL which has done me no good and only made me sicker. Any meds make me sicker. I was far better before I started treatment.

I have never heard anything negative about J. Clinic so I would be interested in your response.
Thanks,
Lymelady
 

Herxing is a horrible thing to have to endure in order to get better but I quess that is our only barometer.

I have been in treatment now for 2 years and had the most awful herx with DOXY alone last week.Was like you,felt bad for over 20 years??

So, I am much better but those gritters are still there,darn it,but I am working to get them out.

I suppose we all must remain open to the fact, that with dealing with this awful stuff,we do not know if a 100% cure is there but I know now, I am back to at least 75% and glad for it.

The diagnosis of Lyme has grown over the years,because people with the disease have educated others and so on and so one and the office you go to has exploded in growth.

The clinic has added new support systems and is doing the best they can do with this ever increasing explosion of Lyme.

I go to your clinic and am thankful to have them and feel like the weight of the world has been taken off of my shoulders.All of the people that work there are very caring.

Lyme is awful,it has changed my life,it has changed my children and the rest of my social circle.What I have now though is better than several years ago when I was is horrific pain with no support.

Time ,time ,time,with this nasty stuff.Accept what you have,be strong,and most of all release all anger and put your energy in you, in order to heal.

Rosie says it best...the turtle wins the race.

So, don't be discouraged.