posted
Hello. I saw Dr. P. in CT - 1st appt today.
I have neuro-lyme and he wants me to take tetracycline.
I have heard that tetracycline only weakly crosses the blood brain barrier.
True? If so, why does it work for neuro-lyme?
Have you taken it and did it help you?
What dose and for how long?
Thanks for your help!
Julie
Posts: 581 | From CT | Registered: May 2008
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
That was the first abx I was on....no gain.
Sorrry...and I am a neuro Lymie
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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posted
Ahhhh, buuut it can be given in much higher dosages than other tetracyclines (mino and doxy) which actually allows for higher brain penetration.
A rule of thumb with tetracyclines goes like this....Mino gets into the brain twice as well as doxy. Doxy penetrates twice as much as tetra. So 200mgs Mino= 400mgs Doxy= 800mgs Tetra.
One can see that a 1500mg dose of Tetra could pack quite a punch. I say could, because everyone is different.
Doc P. is super knowledgable and I agree with him that this is often a great way to try to treat neurolyme.
My husband is currently pulsing high dose tetra and diflucan and seeing some nice results, but neurolyme can sure take time to treat.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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Marnie
Frequent Contributor (5K+ posts)
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posted
Run Lamictil by him.
Blocks Na channels. Lowers glutamate. Reduces folate.
If he's as smart as I think he is...he will understand the significance.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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Big fan of Dr. P and his treatment of my husband's severe neurolyme. Everything he has suggested to us has been good and delivered positive results.
Over the past year, I have grown to trust him. Imagine that - trusting a doctor???
Recently he moved my husband from Mino to Tetra (1500)mg. We start it this week.
-------------------- When you are going through hell, just keep going. Winston Churchill Posts: 20 | From Georgia | Registered: Aug 2007
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Marnie
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posted
Tetracyclines alter the immune response. They esp. lower MMP9...excuuuuuuuuuuuse me, but what about MMP2? Tetracyclines ALSO lower CO2 levels which Bb looks to need to make its "methyl" group.
But...they don't cure!!!
Let's focus on a cure...not merely on controlling the symptoms or results.
KENT!!! How is your wife and your kids..medically? Are you all surviving the flooding?
As fast as you can...read all my posts in the last 10 days...
And get on Lamictil!!! The highest doses of Prozac will help...lamictil is better.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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I am also under the care of Dr P. He also put me on 1500mg Tetra and 250mg of Zith.....let me tell you
When I first went to his office, I could barely walk from such horrible neuro symptoms. I was so ill and bedridden for about 11 months, and I mean COMPLETELY bedridden needing assistance with EVERYTHING.
SInce I started Tetra I HAVE NOT been bedridden and am in shock. I know I still have a long way to go but to go from being non-functional and bedridden to not being bedridden and going out for the first time in over a year.... well that has got to tell you something.
Marnie- I wiah I could undertsand what you write.. but I cant.... What are you saying Tetra does??? I'm still having a lot of neuro symptoms so could you please explain? Are you saying it is just supressing the infection and not killing it?
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
Shandy.......I am so glad to hear you are feeling a bit better! This is great news.
Opus....GAdaisy knows of what she speaks about treatment of neurolyme. She is a saint with a very sick husband.
Marnie, LAMICTAL seems like a drug with some potentially significant side effects, surely there should be an alternative glutamate inhibitor. Anyway, that's a no go for my husband as he would be disqualified for work.
As far as cure...heck yea! that's what we want. Please let us all know LOUD AND CLEAR when you find the definitive one cause we are just feeling around in the dark doing the best we can! Posts: 554 | From Naples, Italy | Registered: Jun 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Julie,
WAY FUNNY....I saw the title of your post and thought, "Hmmm...isn't that a coincidence. I was sitting in Dr. P's office today when someone called in with that exact question."
Now I'm betting it was you! So I was also there when he gave his answer, which is like others said, Tetracycline crosses the BBB half as much as doxycycline but you are getting it at seven times as much dosage, so therefore it will cross it even better.
Not sure if Irma gave you all that info, but that is what he told her to call you back and tell you, if indeed it was you!
I heard her say to the person, "Well, if whoever is telling you that isn't a doctor, I dont' know..." and I thought, hmmm, must be someone from Lymenet getting all kinds of advice!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Sojourner...all drugs have potential side effects.
Disqualified for work because of being put on Lamictil?
It is used for seizure control and manic
depression.
If people were put out of jobs because of being on an anti-depressants...we would have a LOT smaller work force!!!
Lamictil works on MANY levels...not just sodium (Na).
It blocks Na channels. It lowers glutamate. It reduces folate.
Bb looks to need Na to make its ATP.
Na-ATP.
Mg-ATP is normally what we use.
In lyme, glutamate (excitatory) levels go up. This is known.
Folate...a form of this is used as Bb looks to be using ***CO2 (fixation)*** to get its methyl group and to ultimately make sodium acetate. I talked about this path in another post.
Sodium acetate is soluable...esp. in warm water.
Why are your "heaters" off...they need to be on. PGE-1 should be playing a part.
When our DNA is undermethylated...say "hi" to cancer. But lots of back up routes are trying to kick in to stop this.
D3 is one of them.
Your body is trying to save your life!!!
It needs help. This is one very difficult pathogen...esp. because it has a PKCD inhibitor - it appears. Protein kinase C delta form.
This looks to be impacting the gamma-*delta* T cells.
In the Greek alphabet delta = PPi. 2 phosphorus.
ADP->ATP ...we need to add phosphorus.
Making more ATP.
Then Mg will be driven back into the cells.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
Marnie... I am lost... I really wish I understood what you are saying...
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Do you think I jest???? I wasn't being the least bit flip. Hubby can't take an AD, if he does he can't work....Plain and simple. Speculate about a smaller work force all you want....I was 100% serious and correct.
Maybe another thread separate from this one on Lamictal would better serve the board, as I think we were originally talking about tetra and neurolyme. Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
Thanks for all the help. It looks like I will give the tetra a try. I was advised by Dr. P. to build up the dosage slowly as herxes can be bad.
Tracy - yes, I do believe that was me on the phone when you were there. Small world. I am in Fairfield.
Julie
Posts: 581 | From CT | Registered: May 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
I wasn't trying to be flip either:
"CDC: Antidepressants most prescribed drugs in U.S."
Think "outside of the box".
Drugs initially Rx'd to combat one problem have been used to treat other diseases.
BP lowering drugs now are used to help fight cancer...is one example.
That is not surprising...the gram negative pathogens need amino acids to build their cell walls...lipoproteins. And Bb does indeed follow the "cholesterol pathway".
Using an anti-depressant or a BP lowering drug instead of an antibiotic has merit...believe it or not. Yes, even Benicar (ARB) HCT has merit! Scares me, but...
I was offering a possible alternative based on Bb's genetic profile..what it needs to survive and what drugs might impact those needs.
Tetracycline which does inhibit MMP9 (but what about MMP2?) and does lower CO2 levels...and does lower serine proteases - blood clotting ability hindered...the list of ***positives*** goes on (diabetes connections), BUT...
Weigh these against the possible negatives:
Lower levels of our beneficial bacteria. This is really dangerous. On abx. it is VITAL to take probiotics.
Here are some of the rare, but need to be aware of...side effects of Tetracycline:
SIDE-EFFECTS AND SPECIAL PRECAUTIONS:
Even though the evidence of adverse reactions with tetracycline is low anorexia, nausea, vomiting, diarrhoea, stomatitis, glossitis, enterocolitis and pruritis ani may occur in some patients.
Maculopapular and erythematous rashes. Exfoliative dermatitis has been reported but is uncommon. Onycholysis and discolouration of the nails has been noted rarely.
Hypersensitivity reactions to tetracycline including urticaria, angioneurotic oedema, anaphylaxis, anaphylactoid purpura, pericarditis and
exacerbation of systemic lupus erythematosus have been reported.
Hypersensitive individuals have been reported to develop photodynamic reactions (usually allergic) during the use of tetracycline derivatives (particularly demethylchlortetracycline, occasionally chlortetracycline or oxytetracycline and rarely tetracycline).
Individuals with a history of photosensitivity should be instructed to avoid direct exposure to natural or artificial sunlight while under treatment with any tetracycline drug. Treatment should be discontinued at first evidence of skin discomfort.
Azotemia, which is apparently dose related, may occur. Cholestasis has been reported rarely and is usually associated with high dosage levels.
Haemolytic anaemia, thrombocytopoenia, neutropoenia and eosinophilia have been reported in patients treated with tetracycline."
Unless this pathogen has changed...mutated (this research is fairly old):
"Abstract The antispirochetal activity in vitro and in vivo of several antibiotics against ten isolates of Borrelia burgdorferi from human spinal fluids and skin biopsies was determined.
Borrelia burgdorferi was most susceptible
in vitro
to erythromycin, ceftriaxone and cefotaxime.
***Less activity was observed with tetracycline***, amoxycillin and lincomycin , imipenem and augmentin , oxacillin, ciprofloxacin, and ofloxacin.
Penicillin G, normally regarded as appropriate treatment for Lyme disease, had an MIC90 of only 4 mcg/ml.
With the exception of erythromycin, activity in vitro corresponded to the activity in vivo.
Erythromycin, however, was less active in vivo, and penicillin G showed poor activity both in vitro and in vivo."
Vitro = in a petri dish. Vivo = in humans
Ceftriaxone = Rocephin.
C18H16N8Na2O7S3*3.5H2O.
Nice try, but IV Rocephin did not halt lyme in my sis.
(And it is yellowish orange...in case you've been following the far infrared discussions.)
This is one mean and very clever pathogen. Within 20 minutes in a "hostile" environment, it will go into a cyst form...which is extremely hard to penetrate.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
I have not herxed yet from Tetracycline... I have only had improvements.. I dont know why this is????
I know they say you dont have to herx, but I guess if your not herxing your not actuallly killing anything?
Marnie, How I wish I cold follow what you are putting out there..... I sure am worried now about taking teatracycline with all those adverse events linked to it.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
I have not herxed yet from Tetracycline... I have only had improvements.. I dont know why this is????
I know they say you dont have to herx, but I guess if your not herxing your not actuallly killing anything?
Marnie, How I wish I cold follow what you are putting out there..... I sure am worried now about taking teatracycline with all those adverse events linked to it.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
I have not herxed yet from Tetracycline... I have only had improvements.. I dont know why this is????
I know they say you dont have to herx, but I guess if your not herxing your not actuallly killing anything?
Marnie, How I wish I cold follow what you are putting out there..... I sure am worried now about taking teatracycline with all those adverse events linked to it.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
You can edit out the accidental multiple posts.
Yes...tetracycline does HELP. Without a doubt. But cure?
Keep an open mind...because drugs in other classes (besides antibiotics) may work even better. I'm talking about the cholesterol lowering drugs, the anti-depressants...
But these too have significant side effects, so...
Keep an open mind about "alternative" - "cutting edge" therapies (FIR) which may/may not have harmful "side effects".
I'm taking a wait and see...but meanwhile trying to understand HOW that could be possible.
I'm hopeful.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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pamoisondelune
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Member # 11846
posted
I was on 1500 mg Tetracycline for about 5 months, in between other drugs. The first month of Tetra sent me to bed;, i was sleeping 16-18 hours a day. Apparently sleeping is what i do for a herx. The next month better, the next month almost well, the next month even better.... then follows 3 more years of abx continuing.
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Tetracycline is effective. Brain SPECT scans constantly prove this to be true, as the scans increasingly become normal after multiple rounds of "only" Tetracycline in some patients.
The issue isn't whether it works, but whether it will work for you. That no one can say until it does.
Oh, and Marnie -- I think I have the great chance now to say "Told you so" -- glad to hear you're improving. I knew what you had, it was clear as day, and Dr. P was a great choice.
-- Mike
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
This is what I find weird, and question how long will this last.
I ahve been house/bedbound since the birth of my daughter. Being completely bedridden for 10 of those months... my daughter is going on 16 months...
I started Tetracycline on June 5th... 2 days later I was out of bed.... I have since gone out to sing karaoke 3 times, went to my dads and hour away, went to try on wedding gowms, went in my pool with my children....etc... Now I couldnt do ANY of these things before June 5th, I could BARLEY WALK. I hadnt driven since October 2007 and I just started driving again...short distances.
I still have all my symptoms, but less intense. I am in more pain though. MY neuro symptoms are what keep me bed/housebound and they ahve lessned... not to where I want the, which would be GONE. I am also on 250mg of zith MWF so I hope that will work too.
I do feel that I am now at kind of a standstill, but this has got to mean something. The tetra is doing something to me. Going from being useless and bedridden for MONTHS being barley able to walk, feed myself or take care of my children, to getting out of bed, walking better, and doing things is like a miracle.... BUT I know I have a LOOOOG way to go because I still have major pain and my neuro symptoms are still there... just less intense.
Now is it just suppresing the infection or inflammation making me feel better temporarily???? I dont know??
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Marnie
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posted
Metallic Blue...
"Oh, and Marnie -- I think I have the great chance now to say "Told you so" -- glad to hear you're improving. I knew what you had, it was clear as day, and Dr. P was a great choice."
What in the world are you talking about?
1. I'm improving? From what? I do not have lyme, my sis does. Nor do I have manic depression or seizures or migraines.
2. I am not on Lamictil...my son is on very low doses... for seizures. Depakote was causing a "fatty liver" at age 28. He has genetically small vertebral arteries...impacting delivery of glucose to the frontal lobe.
3. Who is Dr. P. ? I have no idea.
I DID say tetracycline helps. Without a doubt...and I do understand, but do NOT underestimate this pathogen.
Some migraines look to be triggered by dilation of blood vessels, others by constriction.
This explains a lot in relationship to Lamictal and what might happen with relationship to neuro lyme:
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