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» LymeNet Flash » Questions and Discussion » Medical Questions » Stopping Treatment

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Author Topic: Stopping Treatment
sonee123
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I have had three different tests of lyme even with igenex and none have come positive.

I have been on treatment with Dr.S since May 09. I have been taking Amoxy 1000mg and biaxin 500mg each day.

Before the treatment my neuro symptoms were crazy. Nerve, eyes, ears, headache, crawling sensation, numbness, tingling, needles, ear pain, joint cracking and ultimately it led to my gut that is severly damaged even today. It seems if i can go to bathroom and digest food fine my symptoms are less and not as severe.

When i started treatment til now i have improved alot of my neuro symptoms and stomach somewhat. I havent had any major stomach tests done. In the begining i lost 23 lbs in a month due to my stomach and neuro symptoms combined togather i couldnt eat anything!

Today after 6 months i can eat but alot of my neuro symptoms and gut still exist. However, better than before.

I had appt with my LLMD he suggest to stop all meds. Now i was shocked because i can honestly say i feel better even for 3 hours that it ake those abx means alot. He even doubts that i have lyme now because all of my tests being negative. However it hought there is no specific test for lyme that is accurate.

At first he also believed it was bartenolla. Now i dont' know.

He wants me to take complete stool test CDSA. for that i have to be off of abx for a month or so. Its been 4 days and deeply i do feel more sick without meds than before.

I am so confused...if it's not lyme then what is it. Can lyme or bartenolla not affect your gut as much it has to me? Is this very rare. He also wants to check for parasites...but why would they cause such severe neuro symptoms. I feel like i am starting all over again as to whats the diagnosis. I thought my response to medications is a solid proof of either bartenolla or lyme present.

Do you guys have any gut symptoms related to lyme symptoms? Anyone?

Thank you!

soni

--------------------
May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen.

Posts: 341 | From Columbia, MD | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
coltman
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It seems because of your gastrointestinal problems and lack of positive tests it might be not lym at all. Kinda similar reason my pcp thinks I dont have parasites (lack of GI symptoms).

Parasites can cause neuro symptoms ,btw, in fact some of them can even reside in the brain.

So why dont you do the test and see, if you do have parasite problem it seems it needs to be addressed first

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Lymetoo
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IF it's the Dr S I'm thinking of .. he has other irons in the fire. He's not really an LLMD.

Could you tell us which state he is in?

Maybe you just need to change drs.

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

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0ldman
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Candida can cause the stomach problems and the fog.

--------------------
Ticks suck.

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TF
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Her Dr. S. is in Maryland and is a very, very good lyme doc.
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glm1111
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It is VERY rare that an test for O&P (ova & parasites) will give clear results. I had many over the yrs and they were all negative.

I had very severe neuro symptoms and can tell you first hand that these parasites can live in the brain and under the scalp. I have had them come out and have seen them first hand.

Check out

www.lymephotos.com

I had these EXACT worms come out in the toilet after I did antiparasitic herbs and salt/c (sea salt) If you feel crawling in your head then you most likely have parasites there,

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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Hoosiers51
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Bartonella can cause horrible GI problems. We have a member on Lyme Friends (www.lymefriends.com) that has stomach problems really badly, and they seem to be from Bart. She is responding to Bart treatment.

It could also be parasites though...

...But if you say the antibiotics are helping you feel so much better, it seems like you should continue treating the Lyme/possible Bart, in my opinion.

I mean who knows what's causing the stomach issues, and maybe it's possible for GI parasites to cause neurological issues, but if the antibiotics are helping the neuro issues (not sure if they are, you just said they were helping but not what) then I would think this is some kind of bacteria that's causing the neuro.

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Paul M in MA
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Hi Soni,

Sorry to hear what you're going through.

My daughter was 12 when she got sick with Lyme.

For the first 8 years she was misdiagnosed. For those 8 years her main symptoms were horrible daily nausea (no vomiting) and fatigue. She also suffered from constant constipation from the Lyme.

After she was treated those GI symptoms were reduced but she still had many of the neuro-lyme symptoms including head pressure, insomnia, word retrieval, etc. She still suffers with the neuro symptoms.

From what we've seen, Lyme can cause severe GI problems even if they are not the most common symptoms.

We have a friend in town that is suffering GI problems from Lyme also.

Good luck. Paul.

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gemofnj
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yes, i would have to agree also that if you respond positively to the abx, then you should continue.

maybe you can come up with an alternative solution.

good luck and keep us posted. [Smile]

Posts: 1127 | From atlantic city, nj | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
TerryK
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It's likely a co-infection if symptoms come back so quickly since borrelia is slow growing.

Bartonella can really affect the gut.

Here is a video presentation on co-infections that affect the gut.
rtsp://ldarm.webcastcenter.com/lda/lda04_mfried.rm


Personally, I'd do my best to stay in treatment since you've had improvement.

Terry
I'm not a doctor

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seibertneurolyme
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I don't think either of the 2 antibiotics you are taking do much for Bartonella.

Most of hubby's G.I. issues -- nausea, vomiting, dry heaves and gastritis have been from bartonella.

He also had G.I. parasites -- giardia and ascaris and trichostrongylus.

In my opinion the G.I. panel from DiagnosTech labs is a much better test than the CDSA from Genova Diagnostics (the old Great Smokies Lab). Hubby has had both tests. The one from DiagnosTechs looks for antibodies to common parasites in the saliva plus checking the stool for ova and parasites.

Could you post your IGeneX test results -- a negative test does not tell the whole story. If you had some positive bands then it could be much more likely that you do have Lyme.

Personally if you improved on the meds then most LLMD's would say that that fact plus the symptoms is enough for a clinical diagnosis -- even without a positive test. If your doc is the one who wrote some books on mold, then I don't think he really believes that strongly in chronic Lyme. At least that is my impression from reading his writings.

Hubby has had the most luck with healing his stomach by using herbs.

Good luck.

Bea Seibert

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TerryK
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I don't know about amoxy but looks like biaxin (maybe coupled with something else?) is helpful or at least makes one feel better.

http://www.personalconsult.com/articles/bartonelladiagnosisandtreatment.html

Terry
I'm not a doctor

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Myco
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I personally would get a new LLMD. Sounds like Bart and Lyme and like you still have some treating to do.
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sonee123
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Dr. S. is in Md.

He even mentioned that since i am young (25) and at this age i should have recovered from taking those abx for past 7 months. I told him that i thought people take meds for years.

I will get my igenex test results and post them here. Thank you so much for everyones support.

I just feel like hitting my head on the wall for spending money on tests that don't even come positive. The CDSA test is $290.00 out of my pocket and most likely it will be negative. Eventhough my gut is totally screwed. I dont have stomach pain as much as i did before. But i have more systemic symptoms all related especially neuro. Those are the scary ones.

I rememeber before i started meds each month a week before my period i had such severe symptoms that i would be disabled. Fever, and all of worst neuro symptoms. After 7 months treating a week before my period is a breeze now its week after my period thats worst but not like that at all.

I have had so many opinions about bart, lyme and parasites. I dont know where to start or what to do. This is my 5th day off of meds and my body does feel very disturbed. I am not an addict to abx at all...but you know when something is working and is missing.

Thanks alot.

--------------------
May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen.

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D Bergy
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My wife has on again off again stomach problems from Lyme. Actually I am fairly certain it is Lyme die off symptoms, as it does not occur until we take even a short break in treatment.

When treatment is started again after a two day break, the symptoms come back.

I am only treating Lyme and on rare occasions Babesia, with Rife type frequency treatments.
Since this type of treatment is real specific as to what is affected, it almost certainly is Lyme causing the problem.

She takes Ginger, Turmeric and Krill Oil, these seem to reduce and or eliminate the symptoms. When she misses the supplements she is more likely to experience the problem.

Dan

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s0ngbird1962
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My son contracted lyme when he was 4, his biggest issues were joint pain, visual disturbances and gastro issues. He vomited almost daily at one point.

He finally began treatment with Dr. J in June & happily almost all symptoms have subsided or disappeared. He hardly has any gastro issues now.

He was quite thin before because of all the vomiting, but now has packed on almost 10lbs and has grown 2".... Thriving on meds. : )

Son has been tested for co-infections, only has lyme.

--------------------
Mom to a 5 year old lymie....
Taking it one day at a time.

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gwb
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quote:
Originally posted by seibertneurolyme:


Hubby has had the most luck with healing his stomach by using herbs.

Good luck.

Bea Seibert

Bea, what herbs did your husband use for healing his stomach? I really need some healing for my stomach.

Gary

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timaca
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Have you been tested for enterovirus? See: www.enterovirusfoundation.org You need to use arup lab for testing. See:
http://www.enterovirusfoundation.org/chronicinfections.shtml

Best, Timaca

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Pinelady
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If you have not been taking something to prevent yeast and a probiotic=I would suspect major problems with bowels.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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ping
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sonee123,

I agree with Myco & a couple of the others; sounds like Lyme, Bart AND YEAST.

My own advice, re: Your doc/LLMD. Please find another one.

ping
"We are more than containers for Lyme"

--------------------
ping
"We are more than containers for Lyme"

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MorningSong
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Soni~

Biaxin alone greatly impacted my intestines. It is during these times that my LLMD will recommend IV antibiotics to give the intestines time to heal. IV can also help reach neuro quicker although there are risks.

My heart goes out to you regarding the negative tests. It could be possible that there is a different bacteria involved, or if it is Lyme/Co-infection it is a strain not showing on tests.

Praying for an answer for you. It seems bacteria related since abx help. Maybe IV an option until intestines heal.

Posts: 515 | From In His Loving Care | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
sonee123
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I don't have health insurance [Frown] . I cant afford IV yet maybe when i move to europe next year i can. I asked him how much is the iv expense he said 4000 a month!! cheez

I thought so too that it is some sort of bacteria because i have responded to abx...i am no where near healthy or cured but i think i have gone 40 percent better than before the treatment.

--------------------
May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen.

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AliG
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A small amount of raw pumkin seeds, taken first thing in the morning before anything else(chewed very thoroughly because if the issue is diverticulitis they would aggravate it) and then every 6 hours will help with intestinal parasites.

Papaya, garlic and bitter melon are good for this also.

Personally, I would try that & see if it made any kind of difference in the gastro stuff.

It IS possible to have Lyme AND have yeast parasites or other issues. It's also possible to develop diverticulitis, an overgrowth of a pathogenic intestinal bacteria and/or other things.

I wouldn't think it was wrong for the LLMD to want to rule out other possibilities even though Lyme CAN cause serious GI issues. What if it was something else & it just got shrugged off as yet another Lyme symptom?

Personally, I would try the things I mentioned for parasites (garlic will also help address yeast), take some good probiotics and some proteolytic enzymes (Like Wobenzym).

If my LLMD wanted to pull me off ABX for a test, I would try to use that opportunity to try to rebuild my intestinal flora & immune system.

Sometimes a short break from the abx can actually get your immune system to make some ABs & you may have a more positive WB afterward. Have you been checked for immune deficiencies as well?

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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glm1111
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Just an adjunct to AliG very good suggestions for getting rid of parasites. I grind my pumpkin seeds in a coffee grinder(easier to digest) and add them to some yogurt and bottled greens.


I also add my enzymes, cinnamon, ginger, cloves to smoothie along with some crushed ice.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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TF
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To all, Sonee's doctor is a much sought-after lyme doctor who has written a book on lyme disease which gets great reviews here on LymeNet. He had undiagnosed lyme disease himself for years. He stresses yeast control, probiotics, etc. and follows Burrascano.

She was very fortunate to get in with him as a patient.

He has not written books about mold.

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AliG
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The pumpkin seeds paralyze the parasites.
I understood that they were more effective if taken alone.

Have you found them to be equally effective mixed in the yogurt, Gael? Pulverizing them is an excellent idea. That should keep them from causing a problem if there's diverticulitis.

If you eat papaya, you can also dry the seeds & pulverize them. They taste peppery & are supposed to be helpful as well.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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sixgoofykids
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Be aware parasite testing is not always that great. Mine was negative, but positive for some intestinal bacteria. My LLMD had me on various herbs for the intestinal bacteria.

I found Humaworm, and it works on those same bacteria, so I switched to that to have fewer pills and spend less $$. Ended up I saw visible parasites. I passed more parasites on Enula.

I had very, very bad gut problems. Had to eat 3500-4000 calories per day to keep my weight to 120 (I'm 5' 8"). Now I'm to a better weight and eat more normally.

Research fermented foods - kefir, sauerkraut, and kombucha. They worked miracles for my gut. Check out Wild Fermentation, it's a great website.

Good luck. It's hard. [Frown]

--------------------
sixgoofykids.blogspot.com

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sonee123
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With TF help i am fortunate to get in with the doctor, no complaints about him. It's rather frusterating to start at square one to think oh it may not be lyme and something else now. Thats what confuses me eventhough it maybe not be lyme but when i see me better on meds like i have been i just take that as proof i have it.

I am on my 6th day of going without abx and i will give it a go and take that CDSA test and listen to the doctor. I will also take suggestion and focus more on antiparasitc herbs and foods.

Enula...is that a herb as well and where can i get that frm a good website.

I was also going to get cumanda and semento since they get are good with all sorts of bacteria. I am also trying gluten free food which doesnt seem to work so far at all. Eating more probiotics and yogurt i am focused on that. Have started drinking alot of green tea. One thing helps me alot i think is cats claw...whenever i have neuro symptoms they dimish when i drink that. So i dont know whats going on!!!

--------------------
May God Bless you, answer your prayers, relieve you of your pain and make you stronger than what you are today. Ameen.

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