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» LymeNet Flash » Questions and Discussion » Medical Questions » Disappointed in llmd/ brain pressure doxy

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Author Topic: Disappointed in llmd/ brain pressure doxy
lucy1336
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2 weeks ago dr told me I was elisa positive, as well as anaplasma and mycoplasma

Started me on oral doxy, mind you I still am questioning a Lyme dx

During the 2 weeks on doxy my head/eye pressure and eye blurriness has been worst then ever

I saw him today and he said never heard doxy doing that....

All I had to do was google it and certainly doxy can cause pressure in head and blurry vision

I also saw a brilliant eye dr after, he said get off the doxy ASAP and is starting me on steroids because of pressure and vision

All I should note.... When I saw llmd 2 weeks ago he was admit something was " there" in my bloodwork

So today I said to him , kind of testing him, that he he took blood for 100 healthy people their results could be identical to mine

He said he agreed and he was giving my the doxy on a " prayer" ... Where 2 weeks ago he said literally , " you have more evidence in bloodwork than a meer hope and prayer"

I give up ....

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lax mom
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If I were you, I would wait and see if the pressure and vision issues go away on their own. Steroids will just make whatever you have flourish.

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desertwind
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Yes, be cautious of the steriods. But indeed doxy and mino can cause raised intracranial pressure in some people. Not common but it can happen.

Did the eye doc see indications of pressure on your optic nerve?

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GretaM
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Well of course you must do what you believe is best for you.

If you had a positive Elisa, and you still doubt that you have lyme, there isn't anything I can say to you to change your mind.

If you saw an LLMD, and he told you what you had and what you needed to start treatment, and you still don't believe you have lyme, there isn't anyone you can blame later, except yourself, if you get sick.

Good luck to you.

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lucy1336
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Thanks for feed back.... Think I have ms to be honest ... And have read doxy in ms folks causes the pressure too.

I have never tried a steroid in my 6 yrs of pain and optic issues , I feel like I should try it...

I agree if i felt strongly a Lyme dx was the case I wouldn't go near the roids but in ms/neurological world it can be beneficial .

I'm scared and tired, does the pressure issue resolve for most people after doxy is stopped?

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poppy
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Lyme symptoms get worse before they get better. Read about the herxheimer reaction.

Lyme requires educated patients. They need to be sure of what they are doing and in agreement with the treatment. Otherwise, it will be a problem for both the patient and the doctor. I don't think doctors should have to convince a patient of the diagnosis. And should not continue with unconvinced patients, whatever the consequences to the patient. They too need to take responsibility.

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Keebler
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I don't know the doctor in question but I know this: Steroids can destroy your life, given the facts of your case.

Why do you question the diagnosis? A positive Elisa for lyme (with classic symptoms),

with positive anaplasma and mycoplasma results. One of those is certainly from a tick and the other can be. It seems very clear that you are dealing with multiple tick borne infections.

. . . an evident herxheimer effect with that doxycline reaction, also a sign that it's hitting lyme [and if doxy does not work for some other reason, minocycline can be substituted] . . .

and the chance that steroids could be very, very damaging to you?

It's important that you become educated. If you are not up for that, it's unlikely that anything is going to help. Sorry to be so blunt but it's true that lyme is a very complex matter.

It requires a great deal from a patient. However, when faced with it, the only way out is to step up to the plate - or not.

First thing to consider:


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/100984?#000000

Topic: what do STEROIDS actually do to those with lyme?

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123939;p=0

Topic: Minor surgery and steriods - complications from steroids that were not supposed to be administered.
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lax mom
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Please watch "Under Our Skin". It's free on Hulu.

http://www.hulu.com/watch/268761

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Keebler
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What was your liver support as you started doxycycline? If that crucial step is not up to speed, a herxheimer can be harsher.

Water is also key.

Not getting too hot is also key to help with your head aches.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
-

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Keebler
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You speak of wanting to gravitate over to the "MS world" of looking at your symptoms. Well, "MS" is very often lyme disease - or other tick-borne infection or chronic stealth infection.

Important reading here:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117839;p=0

Topic: Could (misdiagnosed) MS be Lyme?

Many links here about the Lyme-MS connection -

Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities.
-

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GretaM
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Pardon my analogy, it's the best I can do.

Neurolyme flare day.

Imagine lyme spirochetes are pirates.

Imagine a positive western blot is a ship of pirates, but no flags raised. Just a plain ship.

Imagine a positive ELISA. A pirate ship full of pirates, the skull and crossbones flag raised high.

A positive ELISA is a gift.
It's not very common, and it's the lyme equivalent to a five alarm fire.
You won't ever get a better "sign" than a positive ELISA.

Your body is under seige.


Many of us have been dx'd with MS. Only to see improvement and reduction in lesions after treating lyme.

And head pressure is one of my main symptoms. Has improved slightly with babesia treatment.

Some days the pressure was so bad, the hydromorphone they gave me at the ER didn't even touch the pain and pressure.

Poppy is right. You need to read as much as you can about lyme. The best way to arm yourself is to educate yourself.

I understand being scared and tired.

Some antibiotics hit lyme AND c.pneumoniae.

The doc suggesting steroid sounds like he either isn't aware of your positive ELISA or is lyme-illiterate.
Would he give steroids to a patient with syphillis or leptspirosis? Or would that make him liable?

Obviously, if it's a matter of life and death, then it's a different story.

Please read all you can about steroids with lyme.

I am so scared for you.

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lymeboy
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Ditto what Greta says. If you have a positive Elisa, you shouldn't be questioning anything except your insurance company. Run far away from your doc if he/she's pushing steroids. This can ultimately kill you. At best it'll make you sicker.

Please do yourself a favor and listen to these people here. This is the best place for Lyme disease support. Your doc is not a good one. Use the "seeking a Dr." section for some lists of LLMDs in your area.

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lucy1336
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Ok I will skip the steroids . Point taken

I spend about 4-5 hrs a day researching Lyme I am doing my best to get educated , and ur feedback is part of that so thank you

Its disheartening when a "llmd" treating Lyme patients all day says my bloodwork is shaky..

I have made app with another llmd but it's couple weeks
away

I have watched under skin many times as well

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Keebler
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I know it's rough. In the meantime, be sure to take care of yourself. Not all doctors, even those who SAY they treat lyme are the same. Some say they do but don't really, or are very limited in scope.

Some links here helps to figure out just what a good doctor is. "LLMD" is an honored informal "title" explained here:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

What is a LLMD? LL ND? What is ILADS?

WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.

Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
-

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marypart
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Doxy is not the only route. A good LLMD could help using other antibiotics.

--------------------
Son, 26, Dx Lyme 4/10, Babs 8/10
Had serious arthritis, all gone.
Currently on Valtrex
Daughter, 26,bullseye 7/11
arthritis in knees, cured and off all meds. .
Self:Lyme, bart, sxs gone, no longer treating.

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seibertneurolyme
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If you really have anaplasma then doxy is the best treatment for that. But if you have lyme and anaplasma then you can have very extreme herx reactions.

Lyme is a clinical diagnosis. You can't just go by bloodwork alone. Unfortunately the tests are not that great. But a positive test is very rarely a false positive. False negative test results are common.

But having more than one tickborne infection test positive pretty much proves that the test results are accurate.

Unfortunately treatment for tickborne illnesses is not a quick and easy fix. But you can get better with the help of a good doc. But it is important to have a good doctor/patient relationship and it sounds like that may not be the case with your current doc.

Good luck and keep looking for answers.

Bea Seibert

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lucy1336
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Thx for feedback obiously very upset doxy is not tolerated

Def had inter cranial pressure , for those who have had a spinal tap and had a bad reaction , ( needed a blood patch because fluid leaking ) it's kind of like that feeling just not as bad

I think it's fair to say it's not herx it's a reaction to the doxy

I worry all antibiotics will have this effect on me

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lax mom
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lucy: I am extremely sensitive to meds. My LLMD slowly weaned me up using a liquid form. Literally, I took liquid Bactrim and weaned up 1ml at a time.

Right now, I am only on 50mg of Minocycline and it is helping.

Good Drs don't use a cookie cutter approach and adjust treatment based on your body's response. They know how to wean up even the most sensitive patients. Also, a good LLMD has approaches to try to keep you from going auto-immune.

Don't give up. There is hope!

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desertwind
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I have had 2 CSF leaks - one spinal and one cranial so I certainly know that level of pain.

Prior to a corrective neurosurgery, I was unable to take Doxy because it raised my intracranial pressure. That is not something to mess with at all. If your eye doc could see a compromise in the optic nerve pulsations then you have a problem.

I was able to bring my pressure down in a few days by just stopping doxy. Sometimes there is a medication that is given but I forget the name of it. Mino is even worse then Doxy from what I have been told.

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WPinVA
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Lucy - Yes, it is MUCH harder than it should be to be a Lyme patient, especially at first. You are on your way there - you are researching and you found this site, which is a huge step.

It sounds like your first LLMD wasn't the right one, but don't reject the whole Lyme diagnosis just based on him, as it still very well may be correct. The tests are not definitive but the problems are usually false negatives, not the other way around.

It can be very hard to figure out who are the good LLMDs at first. You can go to "Seeking" and post and that is a start. But the best thing I did was to find a local Lyme disease support group and from the wonderful people there, I was able to find a great doctor. There must be something similar not too far from you. And bonus, the support helps too. Good luck!

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Lymetoo
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Oh man.. I do hope you will stay away from the steroids. That is SCARY!

Lyme causes head pressure + doxy makes you herx = more head pressure.

A herx can include "new" symptoms or an intensification of original symptoms.

Keep educating yourself!

INFO:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=088555;p=0

--------------------
--Lymetutu--
Opinions, not medical advice!

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randibear
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Herx

--------------------
do not look back when the only course is forward

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Shiela
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Hi Lucy1336,

I was diagnosed with MS and put on both steroids and immunosuppresants. It put me in a wheel chair. As a result of the speed I was descending into disease, that same MD that diagnosed me with MS rated me at "8" out of 10--10 being dead on the EDSS (Expanded Disability Status Scale). I was given a hospital bed for life by my primary doctor and in home nursing home care. I couldn't bath or toilet myself. He took me off both and recommended that I read a book called "Healing Lyme" but would not diagnose it. This was a very caring man who was obviously doing the best he could. He had many, many years of experience. That is how difficult it is to differentiate between Lyme and MS.

As far as I know (Do you own research) there are no repercussions of taking antibiotics, in the form of advancing the disease of MS. And even if you have MS, the claim that immunosuppressants delays disease progression is dubious in the light of recent evidence examining it's efficacy in public use.

See: http://ms.about.com/b/2012/07/24/interferons-for-ms-disappoint-how-are-you-coping.htm?nl=1

According to an MS specialist I saw in Boston, he believes that makers of MS drugs have created the marketing concept that a person with MS should get on the drug as soon as possible to avoid disease progression. This creates anxiety about delays in diagnosis and the concept that one should get on the drugs as soon as possible, abetting misdiagnosis and misconceptions that if it is MS and they delay, that things will be worse for them. This is especially true when one believes that dogma that Lyme is not a serious disease and is easy to treat. Thing is, MS (while not a desirable way to live) is not fatal (http://www.msfocus.org/multiple-sclerosis-faqs.aspx). Lyme (also not a desirable way to live) can be fatal (http://cid.oxfordjournals.org/content/52/3/364.full).

Big Pharma are involved here. At $200 a shot for interferon β, every other day for the rest of your life, it would cost $360,000 every 10 years if the cost never went up. And it is estimated that 360,000 people in the US have MS on top of that. That's 129.6 BILLION dollars EVERY TEN YEARS if all MS patients were on an interferon β. Doctors that prescribe Betaseron also get kickbacks from the company.

If it hadn't done so much damage to me, I would be inclined to think, "If it doesn't hurt you than why not". The problem is, if you have Lyme, delay in treatment, DOES hurt you.

There is evidence that taking antibiotics when you have Lyme, and as early as possible, has a positive if not curative affect. As I have experienced, taking immunosuppresants and steriods can have a very detrimental affect on Lyme disease. I am on antibiotics now and am walking again. I no longer have nursing home care and even go out during the day once in awhile. I can cook and clean house some.

Treating MS, life will progressively get worse anyway. By treating Lyme, if that's what you have, it will get better. As has been said, and I totally, whole heartedly agree, if you have a positive test for Lyme, your diagnosis has been handed to you. Even if you have chronic Lyme Complex there is room for improvement with antibiotics and many success stories on this forum.

The caveat is the dangers of using antibiotics in general. However there are also inherent dangers is using steroids. One must make an informed decision on the dangers of any medication and weigh the potential harm against the good.

It's also possible that a person may have MS and Lyme at the same time. There is also the possibility that MS can be Lyme induced.

(http://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf)

Further, there is a connection between MS and certain genetic factors.

(http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-282X1996000300013)

I hope this might have been helpful

Best wishes
_______________________________________________
Do your own research and don't take my word for it. I'm not a health professional and everything I've said represents my own opinion and is not intended to be or to be taken as medical advise.

[ 08-09-2013, 10:33 AM: Message edited by: Shiela ]

--------------------
I'm not there yet but I'm closer than I was yesterday.----
Lyme Band 31,41,58. Being treated for Lyme and Bartonella.

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GretaM
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Sheila-your story is touching and inspiring. Thank you so much for sharing it.

Greta

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we'll win
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I have a different suggestion. If you have lyme disease, then I don't think doxy is for you or anyone.

I am not a medical doctor. I've had lyme for many years and have been on many different antibiotic regimens. With good antibiotics, such as IM or IV Rocephin (cephtriaxone) or IM Bicillin-LA, or good antibiotic combinations, such as ketek, omniceff and flagyll, I usually do pretty well.

But I do not include Doxy as a good antibiotic. I know the studies say it is effective, but for me it has never been effective and only delayed diagnosis and caused me nausea. I can't stand Doxy and feel it is completely worthless. But that is my experience.

In any event, if it might be Lyme Disease, then go to a Lyme Dr. who will give you more effective antibiotics or antibiotic therapies.

I agree strongly with the other writers above who say not to consign yourself to MS. First try aggressively treating the lyme and that might mean getting an aggressive lyme Dr. As the writers above say, there is increasing documentation, besides human experience, that what might be diagnosed as MS is really lyme. As bad as Lyme D. is, it's still treatable.

Keep us updated. Hope you can find some relief.

We'll Win

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Lymetoo
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We'll win.. everyone is different. Many do great on doxy.

--------------------
--Lymetutu--
Opinions, not medical advice!

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OtterJ
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If there is pressure on your optic nerve due to inflammation, I would agree treating with steroids. I take steroids on a limited basis and I know what they can do. I went to my lyme support group yesterday and a few people said that headaches could be caused by too much ammonia and recommended molybendum (sp.) but not as a stand alone but in a cowden protocol blend. I have heard many good things about Japanese Knotweed to treat inflammation.This is recommended by Stephen Buehner, but the company he recommends has been out of this herb.
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