phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
After 13 years of going from doc to doc , treatment after treatment and still not well I just don't know what to believe as all doctors are different.
I have some good days then horrible ones. My husband isn't well and our money is gone so no more traveling and paying out of pocket for any doctors or treatment.
So I go to my GP and he says he doesn't know what to do and I ask him to retest me he says no need as once you are positive for lyme you will always be. He did say he would give me abx but feels they won't help after all these years.
I have never had aggressive treatment like most of you and the first 8 yrs was spent trying to find out what was wrong with me.
The only abx I can take now is Clindamycin which the GP says it might help some but feels there is nothing they can do.
My main symptoms are sinus/ear/body aches and anxiety and have been told just treat the symptoms.
I have spent yrs trying to treat on my own too with natural, detox, diet, etc.
At my age think of just hanging it up and stop driving myself crazy thinking what to do..
TKs guess I needed to vent.
Posts: 1058 | From VA | Registered: Oct 2010
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I can feel your pain. It sure is challenging- all this.
knowing I am not alone helps me much. Hopefully you can find some solace in knowing this also.
I am sorry you have this in your life
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am really sorry you are still feeling miserable and not getting better after such a long time.
Did you ever test for protomyxzoa? It causes symptoms of sinus congestion (and pain), body pain and anxiety. Did you ever get the IGNENEX tests for borellia? If you were positive on bands 23 and/or 41, that is an indication you could have protomyxzoa. 75-80% or people with chronic lyme are testing positive with it.
If borellia is active, you will have 28 day flares when it replicates. You will feel much worse during those flares so they are hard to miss. If that is not happening but you have a low CD57, then it is likely you have protomyxzoa.
More than likely you have been on the wrong diet. You need to try a very low fat vegan diet with no more than 15 grams of fat per day. PR multiplies 150 times faster with lipids. You should also limit arginine and not supplement magnesium.
If you can't afford the test, ask your GP for stromectol to see if you have a response. This pathogen is cheap to treat as you can buy vet ivermectin in a online cataloge for $3 a tube and it will last you at least a week. It is exactly the same thing as stromectol.
If it is PR, you will have more muscle and joint pain, headaches behind the eyes and profound fatigue when you start the ivermectin. However nothing will work if you don't follow the diet because it will just continue to multiply.
I am convinced many people treating for years without getting into remission, have this pathogen. When I look back over my own treatment I see the different pathogens were suppressed much sooner than I thought. I kept treating thinking my meds had quit working until I realized it was another pathogen taking over.
So I was actually clear of borellia in 6 months but it took me another 6 months to realize my symptoms were bartonella and begin treatment for that. I cleared up the bart in about 9 months during which time babesia duncani took over.
I was in exactly the same place as you in the fall of 2011. I couldn't tolerate the drugs and nothing herbal did a thing to help me. I was getting sicker and sicker and felt I would literally die.
Then I tested positive for protomyxzao. I began the diet and ivermectin. Within two months I went from hardly being able to climb a flight of stairs to almost complete remission.
However, it is incurable so it comes back when I do not follow the diet regularly. I have to take ivermectin about once a week to keep it under control.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Check out THE PARASITE WARRIORS SUPPORT THREAD! It has been the missing link for many.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Neff, Not sure if I had the test for Barellia thru igenex did have lyme, babs and bart. Had two positive IgG bands neg IGM . Babs and Bart, PCR and tons of other test neg.
Glm have treated for parasites but not that aggressive . GP did a stool test was neg. Heck everything about me is negative .. Except the ENT keeps saying its chronic sinusitis .. True I can take clindamycin and within four days I start feeling better then in a couple wks all returns.
Lisa, thank you its good to know I am not alone too.
Posts: 1058 | From VA | Registered: Oct 2010
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I agree with Neff and Gael.
Parasites are a huge issue. All the parasite meds and herbs have helped me feel better. I feel the best on the meds. I get way more energy from them. All the parasite meds I've used helped clear up my sinus issues. You have to keep at it though. These things don't stop breeding just because we do a round of meds. They are like us in that they will do anything to survive.
I wouldn't worry about testing and just jump in. You can easily change your diet. Try it, it's free and you don't need a test to see if you feel better. If I can do it, anyone can (low fat/limit meat for proto).
IMO, everyone has parasites--lyme patients just have a higher load. I would at least try the herbal products (herbal formulas, tinctures, etc). I still take them and find them helpful. Check out humaworm for symptoms of parasites.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I have felt like something was living in my intestines for years. Sometimes I feel it moving and bumping around. All drs have always giggled at me when I mentioned it!
yet another thing.....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
So many of us have been in your boat. Round and round we go...and not really getting any better. I was at it longer than you before I finally found my way.
IMO, without a doubt, Dr. K is the best we have. And the good thing is you do not need to be seen by him. He is very generous with his knowledge and publishes details on all of his protocols. If you can find an ART pratitioner, that would be ideal.
The first thing Dr. K does is "deworm" his patients. This treatment needs to be aggressive and long-term. This, for me, was my game-changer. (And btw I never had any symptoms, yet I had a massive parasitic infection).
Some other things he addresses (among many others): - Detoxing - no one gets better if you are not detoxing well. There are many agents to help with this (chlorella, micro silica, apple pectin, diatomaceous earth, bentonite clay, etc.) - Deficiencies (KPU, etc.) - Dental Issues - Infections (read up on his amazing Lyme cocktail) - Reducing EMFs in your environment
The other big piece of my puzzle was MTHFR (go to MTHFR.net for more info.)
Yes, I've had ups and downs since beginning Dr. K's treatments....including some major hurdles.....but without a doubt I am better than I have ever been in the last 20 years.
Wishing you success on your healing journey. God bless.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Mold was making my life miserable. Had mold growing in our kitchen. My outdoor allergies kept getting worse and worse, and my nose was a mess all the time, all year 'round.
I wasn't making any progress with Lyme treatment, either.
Finally found the mold and got rid of it last year. My sinuses cleared and my allergies decreased noticeably.
And now, I no longer take daily allergy meds (am using a few drops of Copaiba essential oil topically on my forehead daily instead) - I use to take 3x the recommended daily dose of Claritin, and *still* had bad sinus problems.
And I finally feel like I'm making progress (very slow progress) with Lyme treatment.
It took a few months for the mold toxins to work their way out of my body enough to really start noticing how much better I felt without breathing that darn mold all the time...
Not saying mold is your issue, or that mold is more important than parasites, just adding to the discussion that mold should be considered in addition to all the other great contributions posted above...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Tammy, thank you for the info. never heard of Dr. K so if you would please pm me some info..
Razzel, our house doesn't have mold but that doesn't mean I don't come in contact with it.
Oh, why can't this be simple either take meds get better or have meds that kill the symptoms.
Tks all.
Posts: 1058 | From VA | Registered: Oct 2010
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posted
I have struggled also since 1996. I am better today, but still sooo far from normal. On a good day I still feel fluish and tired BUT I can take a 2 mile walk in the evenings a few times a week.Three years of ABX did very little and (IMO) they work reliably in early lyme ONLY . I think they do very little after lyme has penetrated tissues. What has helped me find SOME improvement is : dealing with parasites - I was doubtful but not anymore Using antiparasitical herbs rife ( EMEM)
Altrnatives have made a difference! However, I am convinced we know LITTLE about this disease and many LLMDs are wasting patients' money with ABX .
I had a STRONG DIE OFF ( herx) with ivermectin and a substitute for albendazole ! Ivermectin / praziquantel combo took away most asthma symptoms that made my life HELL . I am also having a MAJOR die off from colloidal nano silver , Sovereign brand . Dr Burgdoefer ADVISED using colloidal SILVER - he discovered lyme . There are others here and at other boards who have used colloidal nano silver and even went back to work. It is enormously powerful and many LLMDs advocate the Argentyn 23 brand or Sovereign.
Another herb that helps me enormously ( I rotate all things ) is artemesia annua from Herb Pharm.
You can get cheap safe substitutes for parasite meds. PM me if needed.
Many lyme and morgellons patients have seen the parasite meds to be helpful, but you have to go slow and will feel horrible at first.
I do not think we have a cure in sight , but believe we can improve- my two cents .
Posts: 153 | From Huntsville Al | Registered: Jun 2013
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posted
I have struggled also since 1996. I am better today, but still sooo far from normal. On a good day I still feel fluish and tired BUT I can take a 2 mile walk in the evenings a few times a week.Three years of ABX did very little and (IMO) they work reliably in early lyme ONLY . I think they do very little after lyme has penetrated tissues. What has helped me find SOME improvement is : dealing with parasites - I was doubtful but not anymore Using antiparasitical herbs rife ( EMEM)
Altrnatives have made a difference! However, I am convinced we know LITTLE about this disease and many LLMDs are wasting patients' money with ABX .
I had a STRONG DIE OFF ( herx) with ivermectin and a substitute for albendazole ! Ivermectin / praziquantel combo took away most asthma symptoms that made my life HELL . I am also having a MAJOR die off from colloidal nano silver , Sovereign brand . Dr Burgdoefer ADVISED using colloidal SILVER - he discovered lyme . There are others here and at other boards who have used colloidal nano silver and even went back to work. It is enormously powerful and many LLMDs advocate the Argentyn 23 brand or Sovereign.
Another herb that helps me enormously ( I rotate all things ) is artemesia annua from Herb Pharm.
You can get cheap safe substitutes for parasite meds. PM me if needed.
Many lyme and morgellons patients have seen the parasite meds to be helpful, but you have to go slow and will feel horrible at first.
I do not think we have a cure in sight , but believe we can improve- my two cents .
Posts: 153 | From Huntsville Al | Registered: Jun 2013
| IP: Logged |
posted
I have struggled also since 1996. I am better today, but still sooo far from normal. On a good day I still feel fluish and tired BUT I can take a 2 mile walk in the evenings a few times a week.Three years of ABX did very little and (IMO) they work reliably in early lyme ONLY . I think they do very little after lyme has penetrated tissues. What has helped me find SOME improvement is : dealing with parasites - I was doubtful but not anymore Using antiparasitical herbs rife ( EMEM)
Altrnatives have made a difference! However, I am convinced we know LITTLE about this disease and many LLMDs are wasting patients' money with ABX .
I had a STRONG DIE OFF ( herx) with ivermectin and a substitute for albendazole ! Ivermectin / praziquantel combo took away most asthma symptoms that made my life HELL . I am also having a MAJOR die off from colloidal nano silver , Sovereign brand . Dr Burgdoefer ADVISED using colloidal SILVER - he discovered lyme . There are others here and at other boards who have used colloidal nano silver and even went back to work. It is enormously powerful and many LLMDs advocate the Argentyn 23 brand or Sovereign.
Another herb that helps me enormously ( I rotate all things ) is artemesia annua from Herb Pharm.
You can get cheap safe substitutes for parasite meds. PM me if needed.
Many lyme and morgellons patients have seen the parasite meds to be helpful, but you have to go slow and will feel horrible at first.
I do not think we have a cure in sight , but believe we can improve- my two cents .
Posts: 153 | From Huntsville Al | Registered: Jun 2013
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Dixie, thank you so much .. What would your recommend that is safe for a parasite med? I feel so confused and in the dark with all of what to do etc.
I am trying to get to the ENT today, probably a waste but my sinus and ears are going crazy this has been a long time symptom . Just want to make sure its not an infection.. Feeling terrible today.
Gee I couldn't walk a mile it all I can do to get groceries and do small chores at home. I am 70 but that is no excuse.
Now if I can make it to the ENT I am so weak.. tks
Posts: 1058 | From VA | Registered: Oct 2010
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