Saw Dr. Gacek today!

Jewels ~ Can you post his protocol here so I can take it to my primary? I am trying to find out how to get ahold of his book, got any ideas?

Thanks

Sparrow

 

I got his email address from soccermom on this forum__it is [email protected]. I think it is better if you have a response from him to take to your GP. He basically wrote that there wasn't a doctor in Minnesota that he knew of using his method of treatment. Then he suggested maybe my GP would be more willing to give me the meds. His protocol is 800 mg of acyclovir 3 times a day for 3 weeks then if relief from vertigo 2 times a day for 3 weeks, if continued relief 1 a day for 6 months.
I took his picture and bio which i got from the Univ. Mass hospital website and the other mentioned things so my doctor knew he had credibility.
You can get his book from Amazon but it costs over $100. I tried ordering it through my public library but the University of Minnesota _Med school would not release it into circulation. Maybe your library would have better luck.
P.S. Dr. Gacek also stated in his email that he has a 90% success rate!!!!!
take Care.

 

can you pm me with his info

 

I sent you a PM with the info. Good Luck!

Carol

 

Jewels ~ thank you, I will email him. It's worth a try !!!

Sparrow

 

I wonder how many emails have been sent to the good doc as a result of this post... Let's hope he is able to make many of us feel better!

 

hey guys. always looking for something to help. is valtrex supposed to treat the maddening fullness and pressure? what does it possibly treat? thanks and God bless. deadeye

 

Thank you many times Carolanne for keeping the Dr. Gacek info alive. I have been promoting his (& brothers) great work since I found out about it from my doctor in 2003. I always carry his book to any new doctor appointment. Please suggest to him, he rewites this book in patients terms and gets it for sale for less money. He would sell many and help thousands. I still have the original copy of a letter a Neuro-otologist wrote referring to Dr. Gacek's book. Here is it's exact wording:

...

Gacek and Gacek in "Viral Neuropathies in the Temporal Bone" adv. in Oto-Rhino-Laryngology Vol. 60, 2002, indicate that a virus can often cause one of two inner ear problems. A virus, most often from the herpes family, can cause either an endolabrynthitis that can progress to an endolymphatic hydrops or neuritis of the inferior or superior vestibular nerve. This has been our experience as well. We have had good results with a maintenance dose of an antiviral such as Valtrex 500mg bid with a therapeutic dose of Valtrex 1000mg bid X10 days for the appearance of vesicles, cold sores, or dizziness exacerbations in the case of vestibular patients with Herpes Simplex or Zoster.

Obviously, the final decision on antiviral use is up to the patient and their primary care physician. We make these recommendations based upon our experience with endolymphatic hydrops patients.

...


Note: Doctors name or to whom this was written is not disclosed here. Doctor name and any reference to me is by permission only. Email me from my webpage http://champie.net if you desire such for help in presenting your case to your doubting doctors.

Carolanne, You have permission to take a copy of this to Dr. Gacek or I will send you a copy of the original letter with letterhead, signature, etc. so Dr. Gacek will know what an impact he has had. So far mainly east and west coast. The middle USA and Canada need to get going. Sam

 

Sorry I over looked this post .... The diabetes, Parkinsons, ALS, MS, etc., disease processes are well understood. Many causes are suspected and reasonable. So called Meniere's disease has no agreed on disease process. Some doctors say it is IEH, others say not since hydrops is not always found with autopsy on folks with classic Meniere's symptoms.

See the difference? Meniere's is a label given by symptoms. Sometimes doctors rule out other possibilities, many times not. Anything can be called Meniere's if the symptoms are present. Vestibular problems from MS are commonly called Meniere's. There is NO Meniere's mystery, just vestibular disorder from the MS disease process. Correct diagnosis ... MS. This is my point ... Meniere's disease labeling is a failure to diagnosis and find what is wrong ... what process is happening to produce said symptoms. With diabetes we know it is an insulin issue and MS, ALS, etc have understood processes. Fibromyalgia would be a better comparision with Meniere's, but unstead of naming it from the discoverers name, it is named from the symptoms, meaning sore muscles and tendons.

Many disorders and diseases are named for their discoverer,IE, Susac's syndrome, Waardenburg's syndrome, etc., simply meaning the symptoms described by these folks. To say Meniere's disease from Morbus Meniere's is saying Dr. Meniere described "a disease of its own kind." Not true. Diseases involved in vestibular disorder are many and have names and their processes are understood at least in part.

I think this thread with its many great post from a variety of folks, bears witness to what I am saying ... sure Meniere's is almost a household word, but the winds of change are blowing. Look at all the folks here with hydrops diagnosis, MAV, etc. In 2003 when I first joined the forum hydrops was a dirty word. I was one of the few that had the ELH diagnosis. Now folks have no problem in admitting their doctor gave a ELH dx, not the old Meniere's disease.

No, virus isn't what causes all vestibular disorder, but to deny it is a major cause, is ignorance.

I can find no evidence that so called "Meniere's disease" has no cause and is a diagnosis by medical guidelines. I have studied alien abductions and have no report of "Meniere's symptoms" from such. I have a good friend, "Charles E. Sellier", that has done extensive research on UFO's and alien abduction and prehaps it is connected to Meniere's, but his many books, especially "UFO" do not indicate such a connection. Appreciate your opinion, but let's not be to hasty in saying Parkinson, diabetes, etc. have no known cause. I think a preponderence of the evidence says otherwise.

http://www.wrongdiagnosis.com/d/diabetes/causes.htm

http://www.ehealthmd.com/library/Parkinsons-Disease/PD_causes.html

http://www.pdf.org/AboutPD/causes.cfm

Important points: No one cause can be established, because there are several causes. Sound familiar? To say there is no cause is false. To say there is no one cause is correct. To say the disease process is understood (so called Meniere's excluded) is correct. Why is Meniere's different. Because the disease process if any is involved, is different, again virus, ms, etc. If trauma is the cause, then no disease at all.

And again the difference this all makes is in treatment. So called "Meniere's" from virus requires antiviral, from MS requires MS treatment, and from trauma may require physical therapy.
This is the danger in a Meniere's label, the lack of proper treatment. One treatment does not fit all. BPPV treatment differs from ELH, but if we just lump these together in the old Meniere's catchall box, then how can one receive proper treatment? Don't forget MAV, PLF, Schwaanmoa, etc., each requiring a different treatment plan. No Meniere's doesn't vary in folks, vestibular disorder varies in folks and "Meniere's" only exist in theory and name, not physical reality. Well, I think this poor horse's bones has had enough. LOL! Sam

 

I like what you are saying Sam. I no longer refer to myself as having Menieres, I just droll out the entire word of Endolymphatic Hydrops and watch everyone glaze over, lol. The more I read your postings here the more I agree with your theories and comments and they are fact based. It has helped me tremendously and Sam, I wanted you to know this.

I copied out your last comment above to add to my pile I am taking to first my primary, then to my neurotologist (who will just roll his eyes at me or flale his hands in my face) and then to my neurologist and finally to my infectious disease doc. All three have denied me a prescription for Valtrex or any antiviral med which I think is a travesty for me. I think if I am persistent enough one of them may cave in. Will be looking up natural ways of getting lysine too, thanks for your suggestion. You said watermellon seeds?

Sparrow

 

Sparrow, If you think it would help, I could photograph the letter and email it to you. Also you can copy the stories from the ENOUGH webpage for use at your doctors. Thanks for your kind comments and I hope you will continue to search for better treatment. Hopefully antiviral will help you. Stay firm and glad to help. Sam

 

Thanks Sam, just pm'd you with my information

Sparrow

 

Sam C-

You are welcome - I'll print your post and bring to my followup in 2 weeks.

I was actually just feeling like I need some positive reinforcement on the Valtrex issue and saw that my thread was still alive and active. I have been on it for 10 days and there is really no difference yet, except the mild ear pain I was having in my "good" ear (suspicion of beginning meniere's according to the VEMP), has pretty much gone away.

Does it really take a full three weeks for things to get better? I so want this to work for me, before I lose hearing in both ears! Can anybody make me feel a little more hopeful? Don't lie to me, I can take it (I think....)

 

Antiviral meds will help if it's virus based, but won't if it's not virus based. That's why it doesn't help everyone.

 

I know that it will only help if viral, but I want to know if people who have been helped noticed a difference right away or if it really takes several weeks. Dr. Gacek said it takes 3 weeks to have any change, but personal experience is what I am looking for.

 

Hi Carol -

Hopefully Larry will see this post and chat, he has had results! Sam will come back too and he also has others who can vouch for viral meds. I think these drugs really take time to get into the system. And remember it's supposed to prevent further damage.

Mya

 

Carol,
My ear pain was alleviated after the first 5 days. It's been 15 days and now I don't have the intense fullness and the tinnitus has reduced substanially. I prayfully hope this will work for you.

 

Carolanne,
I had the ice water test. It did nothing to me!!!!!!!!!!!!! That just proved that I did indeed have meniere's!!

Patti

 

guys probably a stupid ? but can they tell if it's viral or not by testing,etc. sorry to be such a dummy. reading this post really got me fired up. am anxious to try anything!

 

Sam: What are the differences between Dr. Gacek's books? There seem to be a few with very similar names.