Newly Diagnosed and Overwhelmed...

Hello all!
I have been reading many posts on this forum and have found the information to be educational and helpful. Here is my story:

-Diagnosed with anxiety and depression in 2006, was prescribed Lexapro and then Pristiq. At this point, I was having problems swallowing.

-I remained "medicated" through 2 pregnancies until I got enough will power to tell my doctor to take me off the meds in February of this year.

-In March, I began to experience significant muscle pain in my back. Additionally, I have horrible brain fog and word recall, fatigue, chronic headaches, etc. The pain got so bad I saw my doctor in June and was diagnosed with Fibromyalgia and was put on Lyrica. I didn't like the way Lyrica made me feel so I decided to seek out alternative methods to deal with my pain. My pain got to the unbearable point in September so I sought out an integrative doctor (who was, of course,an out of network doctor).

-This doctor ran MANY blood tests (which I had to have my PCP re-write the script so the insurance company would pay for it). One test was the Western Blot, which came back negative...BUT my total immunoglobulins was a whopping 4.52! (The flag range is 0-0.9) This was a huge flag to both my doctors but I had to REALLY convince my PCP to start me on 4 weeks of docycycline. After 4 weeks, my stomach became irritated and since I wasn't seeing improvement (actually the pain got WORSE) my PCP made the call that I did not have Lyme.

-2 weeks later (beginning of November) I saw my integrative doctor who decided we needed a more accurate and descriptive bloodtest...so I paid out of pocket to send my blood to Stony Brook University Medical Center. While waiting for the results he prescribed me Flagyl (1 gram per day) and Amoxicillin (1 gram per day) as well as various supplements such as probiotics, omega 3's, vitamin D, etc. 2 weeks later, the blood tests came back "INDETERMINATE" showing 1 CDC specific IGM band (41) and nonspecific bands (20,31,37,62,66,68,83,93) and 4 CDC specific IGG bands (23,28,41,58) and nonspecific bands (20,25,31,35). At this point, my integrative doctor officially diagnosed me with disseminated Lyme and after giving this bloodtest to my PCP, he agreed as well (but he will not take the reign for treatment, he is leaving that to my integrative dr).

-After 3 weeks of treatment with Flagyl and Amox., there was too much damage done to my stomach and esophagus that I was in too much pain and could not eat anything without curling up in a ball of pain, so I had to stop the abx. I should mention that I was herxing like crazy for all 3 weeks and symptoms that we never apparent reared their ugly heads (such as joint pain)

Since then (it has been 3 weeks) my husband and I have been researching high and low about all treatments for Lyme and read many books, including the book "The Top 10 Lyme Disease Treatments" by Bryan Rosner. We also saw my integrative doctor this morning. Here's my issue: we are paying OUT OF POCKET for everything my integrative doctor prescribes and suggests, including every follow up visit (which was $400 for the initial visit and $300 for every follow up). He now wants me to take Zithromax 500 mg (not sure how many times per day), Bicillin shots 1-2 million 2 times per week (which will cost anywhere from $400-$800 for a 10 week course) plus office visits to have a nurse administer the shot, Rofampen (sp?) 300 mg (not sure how many times per day) PLUS Wobenzym, Samento, Banderol and Cordyceps (organic mushroom mycellium). I have not yet filled the prescription Abx because I dropped $500 just between the doctor visit and supplements. I AM SO OVERWHELMED!!!!

My husband and I are going to meet with a woman tonight who is knowledgable in Rife machines because we feel that will be a cornerstone to my recovery. I am putting up my entire story to see if there is ANYONE out there who has been in a similar situation or going through the same thing as me. I am a 29 year old mother of 2 little boys, one who is Autistic and needs his mother more than ever. I need to fix myself and while I understand this could be a long road I want to ensure I am spending this astronomical amount of money in the right way and in a way that will lead to my recovery.

Please, any advice and information would be greatly appreciated!
Thank you!

Hi Rachacha,

Welcome.

I saw Stoneybrook Lab. are you from the Island?

I grew up there and my Dad had his blood work done there many many years ago.

One other book that is well worth the price is Insights Into Lyme Disease

That has 13 other doctors .

Lyme is very costly. I am curious who you doctor is? You can not say the name of a doctor on the forum but we give initials or email.

You can email me on the little envelope by my name.

I am thinking your doc is somewhere in NY state.

I know my kid sister has lyme too and can't get her to a doctor.

By the way ...all the antibiotics you are taken are standard in antibiotic treatment therapy. Some give one first and the other next.

I have been to a doctor who treats with antibiotics IV and oral and recomends the rife machine but does not claim that the rife machine is the cure for lyme. He suffers from lyme himself.

Many doctors use BOTH antibiotics and other supplements to get you through.

A parasite stool test helped me a lot. Ticks carry parasites.

Also an ISAC panel for thick blood saved my life. It is covered by insurance.

I definitely felt the effects of the rife and had herxheimer reactions to that
also. and the machine he had was over $3000.

I don't know who your doctor is but some Integrative docs are very good with lyme because it is so tricky and sticky to get to.

Again, read books written by lyme docs for the best views here.

A lot of people have been cured from lyme....they ususlly are not posting
on these forums though after they moved back on with their lives.


Can you email me you doctor. Is he a LYME LITERATE MD ???

from the prices it sort of sounds like it???

Post Edited (bucci) : 12/16/2011 3:35:19 PM (GMT-7)