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» LymeNet Flash » Questions and Discussion » Medical Questions » Choosing treatment--must do ASAP!

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Author Topic: Choosing treatment--must do ASAP!
cw
Junior Member
Member # 9503

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Hi all,

I had a tick bite in December 2005, and stupidly did not do anything about it. I had some knee pain symptoms in March and went to get tested. Got what looked like a positive result at the good lab in California. Prior to all this, but after the tick bite, I was also having stomach difficulties: intermittent burping and/or pressure in esophagus area. My sort-of LLMD put me on doxycycline for 6 weeks. Stomach problems continued, but I didn't notice any lyme-type symptoms. I was referred to a more LLMD who does heavy antibiotics. I was not able to take them right away after the doxycycline because my stomach and esophagus were too irritated. He initially said that he wants me to go on two to three months of amoxicillin, which I thought he believed was a cure. I did some reading which said that amoxicillin is a bad choice because it tends to cause the lyme to go into cyst form. I questioned him on this and he said that the amoxicillin would not cure the lyme and that he was asking me to go on it (heavy dose) as a diagnostic and to alleviate symptoms. Apparently what he thinks is a cure is to go on alinia for 3-4 weeks, then two months of amoxicillin, then some more antibiotics of some kind for quite a while or Dr. Zhang's Chinese herb protocol. (This was last Monday.) I was frustrated that the antibiotics seemed neverending, that they might really mess up my digestive system, and that I wasn't really having lyme symptoms, just digestive ones. So I told him that I was going to just take care of the digestive things for a while. (I also have another MD who knows a lot about lyme who has been warning me against antibiotics because they could permanently mess me up and don't always work, and suggests Dr. Cowden's protocol.) When I decided to focus on the digestion and believe that I had cured the lyme with the earlier doxycyline, I felt greatly relieved, that I had made the right decision and I slept very well. Then, ironically, two days later, I began to have the scariest lyme-type symptoms: tingling/burning on my arms, hands, and legs; loud ringing in my ears; terrible insomnia; anxiety; and inability to get anything done. I have had five days of this and I am terrified. I have decided that I must get on the best possible treatment right away that will: 1)cure it, and 2) not permanently damage me. I am considering three choices: 1) Dr. Cowden's protocol, 2) Dr. Zhang'g protocol alone or in rotation with antibiotics, or 3) some type of heavy antibiotic treatment plan. I am terrified, and am having to make this decision when I'm not feeling well or smart. I would appreciate your help with suggestions about the best road to take. I can't find much info on Cowden's or Zhang's and how these have worked for people. Also, I'd like to know what co-infections to test for (could this be my digestive problem?) and the best tests to take. Thank you all for your help.
Sincerely,
CW

Posts: 2 | From Northern California | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
northstar
Frequent Contributor (1K+ posts)
Member # 7911

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Hi,

I am not sure what direction you want to go, but that is understandable since there are many options, and you are having some lyme-like symptoms.

1. If you want a new llmd:

Post in "seeking a doctor" and title it for your state.

You will see there are many people from CA who have sought a recommended doctor. Maybe you could try the pm to reach them, too.

2. Do a search on here for discussions of Cowden protocol, Zhang, and also search for a poster named Tabers, who initiated lots of good discussions about tratment plans;

Also search for allinia, penicillin, etc.

5. Yes, lyme can affect digestion via cranial nerve involvement (see Sherrer paper, posted earlier). And so can bartonella. Not saying that is why you are having problems, but just it is a possibility.

6. Also, try to get the book by Buhner (search here), which is herbal approach, which some have found helped prior to abx/diagnosis, and as a post abx treatment. Even he advocates abx as a major part of lyme treatment. (available from amazon on the left side of the page, or do a search here for comments)

7. I assume you have been diagnosed with lyme? So I do not understand why the amoxy challenge. Your md should be testing for babesia, bartonella, anaplasmosis, ehrlichia as a part of the lyme treatment program. If not, then you may want to reconsider doctors, since these seem to be prevalent in those diagnosed with lyme.

8. Also, if you were on doxy, you need probiotics for the flora damage. Now.

9.Is there an allergy to whatever you were taking for your stomach?

10. Treatment choice is personal decision, as is doctor choice. There are as many abx routines as doctors. Nothing works the same for everyone, especially with the use of combo treatments. I have not seen any single/mono abx treatment mentioned much here (I think there is one md on the east coast doing this, and results are pro's and con's).

The physician as artist, will not choose one path only. They are flexible and will adjust depending on the health/condition/reaction of the patient.

11. My opinion/feelings and I am not any medically trained person is : if neuro is involved, I would use abx for sure unless you are having drug reaction. That was a choice I made gladly. But that was for me......you choose for you.

Long term abx does mess with the digestive system, and has side effects, usually temporary, but for some isolated cases, depending on the drug (cipro, etc) there were some extended problems..

But for me, I was in bad shape then, and wanted the biggest guns I could find. It does not mean you are on them forever, as treatment in later stages can sometimes involves pulsing.

For me, I was on for 10 months, pulsing by the end. Quit, did naturopathic. Resumed in 6 months for mild pulsing for follow up and a co-infection.

12. No matter what, the doctor makes the call on the treatment plan, and you choose the doctor.

13. Now, a frequently mentioned integrative but really alt. md, is available in Wa. state, if you search for "Gigi" you may contact her.

Summary: there is no one way. And if you do not like the path you chose, then change! Of course, you may be well, so that becomes a moot option!


Good luck

N.

[ 14. August 2006, 06:02 PM: Message edited by: northstar ]

Posts: 1331 | From hither and yonder | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
Curley911
LymeNet Contributor
Member # 2205

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Hi, I am breaking up this post so more people can read and help.

Otherwise Lymies w/eye and neuro problems will have trouble reading it.


posted 14 August, 2006 04:14 PM
--------------------------------------------------------------------------------
Hi all,

I had a tick bite in December 2005, and stupidly did not do anything about it. I had some knee pain symptoms in March and went to get tested. Got what looked like a positive result at the good lab in California.

Prior to all this, but after the tick bite, I was also having stomach difficulties: intermittent burping and/or pressure in esophagus area. My sort-of LLMD put me on doxycycline for 6 weeks. Stomach problems continued, but I didn't notice any lyme-type symptoms. I was referred to a more LLMD who does heavy antibiotics.

I was not able to take them right away after the doxycycline because my stomach and esophagus were too irritated. He initially said that he wants me to go on two to three months of amoxicillin, which I thought he believed was a cure. I did some reading which said that amoxicillin is a bad choice because it tends to cause the lyme to go into cyst form.

I questioned him on this and he said that the amoxicillin would not cure the lyme and that he was asking me to go on it (heavy dose) as a diagnostic and to alleviate symptoms. Apparently what he thinks is a cure is to go on alinia for 3-4 weeks, then two months of amoxicillin, then some more antibiotics of some kind for quite a while or Dr. Zhang's Chinese herb protocol. (This was last Monday.)

I was frustrated that the antibiotics seemed neverending, that they might really mess up my digestive system, and that I wasn't really having lyme symptoms, just digestive ones. So I told him that I was going to just take care of the digestive things for a while. (I also have another MD who knows a lot about lyme who has been warning me against antibiotics because they could permanently mess me up and don't always work, and suggests Dr. Cowden's protocol.)

When I decided to focus on the digestion and believe that I had cured the lyme with the earlier doxycyline, I felt greatly relieved, that I had made the right decision and I slept very well. Then, ironically, two days later, I began to have the scariest lyme-type symptoms: tingling/burning on my arms, hands, and legs; loud ringing in my ears; terrible insomnia; anxiety; and inability to get anything done. I have had five days of this and I am terrified.

I have decided that I must get on the best possible treatment right away that will:
1)cure it, and
2) not permanently damage me.

I am considering three choices:
1) Dr. Cowden's protocol,
2) Dr. Zhang'g protocol alone or in rotation with antibiotics, or
3) some type of heavy antibiotic treatment plan.

I am terrified, and am having to make this decision when I'm not feeling well or smart. I would appreciate your help with suggestions about the best road to take. I can't find much info on Cowden's or Zhang's and how these have worked for people. Also, I'd like to know what co-infections to test for (could this be my digestive problem?) and the best tests to take. Thank you all for your help.
Sincerely,
CW

Posts: 982 | From Florida | Registered: Feb 2002  |  IP: Logged | Report this post to a Moderator
Curley911
LymeNet Contributor
Member # 2205

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HI CW,

Sorry to hear about your journey with Lyme. Off the top of my head I can say my nephew had horrible gastro problems and almost died butafter a great LLMD, abx and follow thru with treatment, he finished college and is doing awesome. It was the doctor's and "specialists" that almost killed him by not diagnosing lyme.

He lost 60 lbs in 3 months, had heavy fatigue and looked horrible but the "specialist's" couldn't find a cause.

His Mom listened to me and got the Bowen test. It tests for Babesia and Ehrlichia which are two
very common lyme co-infections. He had lyme.

I notice one of your choice's is heavy abx. After 5 years of treatment (him and me), we both are well. There is no "quick cure" for lyme. I started w/100 mgs doxy and later 1000 mgs of biaxin was added. This is alot of abx but we never got intravaneous.

Basically what I'm saying is get on abx, stay on the path of ONE EXCELLENT LLMD. My nephew's gastro problems were severe. He cramped when he ate and had sharp pains. He also had no apetite.

It was difficult to believe adding abx to a sick stomach would be good but after about 3 months the bacteria in the gastro backed off and he was able to eat. The appetite came back and the pain receded.

I hope this helps. My point: Slow, consistent abx and an excellent LLMD. FOR ME, lyme is far worse than antibiotics. Keep up w/alot of acidophillus!

Good luck!
Curley

Posts: 982 | From Florida | Registered: Feb 2002  |  IP: Logged | Report this post to a Moderator
just don
Frequent Contributor (1K+ posts)
Member # 1129

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Flagyl(sp) is a cyst buster and drives them out of hiding when another one kills them off.

Careful on ramping up because it hits some people real hard. Have to cut pills in 1/8's to increase .

Thats where I would turn if I were you. Maybe go back to that good heavy abx doctor, ask for a lyme brained foggy forgivness and see if he would "really treat" your sxs hard, (before they become chronic)

That seems to be the key, get them before they get YOU!!! Natural path stuff is good for mopping up AFTER the abx kill off!

Since I am NOT a doctor nor did I stay in a Holiday Express,,, my opinions are just that from --just don--

--------------------
just don

Posts: 4548 | From Middle of midwest | Registered: May 2001  |  IP: Logged | Report this post to a Moderator
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686

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My thoughts:

1) You should consider that the word "cure" is not always believed to be possible. The spirochete likely lives within our bodies and relapse at a future time of stress, etc. is likely. For me, I was sick for 3-4 years, well for 3 years and then had a major relapse. You should be able to attain a state of wellness and move on with life, but it takes time, and "cure" is not always the goal.

2) I would get tested for Bartonella, Babesia Microti, Babesia WA-1 if ever on the west coast when potentially bitten, Ehrlichia, Anaplasma, Mycoplasma Fermentans.

3) I would get the Buhner book Healing Lyme and read that if you are considering herbal options. I think they are very good, but the book will give you more information. Cowden's protocol may be ok but is a bit more limited. I am not familar with Dr. Zhang.

4) Detox, heavy metals, parasites - all absolute keys to success in my experience. Chlorella has been a key in my detox/heavy metals program.

5) Consider energetic options such as the KMT microcurrent device from Dr. K.

More info on my web site listed below.

--------------------
Be well,
Scott

Posts: 4617 | From San Jose, CA | Registered: Jul 2005  |  IP: Logged | Report this post to a Moderator
treepatrol
Honored Contributor (10K+ posts)
Member # 4117

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Hes probaly trying to get lyme under control to start with and coinfections then add in other more aggressive stuff as you get your herx's down sized?

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
   

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