Topic: I don't think I have Borrellia, or anything else.
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I really don't know anymmore. Been through 5 months of Babesia treatment, and 6 months of Lyme treatment. We start Bartonella treatment this month and we are hoping this puts me over the edge to recovery.
I can't take the torturous pain in my wrists, forearms, elbows and shoulders. Now the feet have been acting up again.
I get my blood drawn again for Babesia this month. The hell never ends. I don't know how you people being treated for years are able to continue.
My doctor said most of their patients are better in about a year. I am 3-4 months away and don't feel better at all.
Maybe the MGUS has a hold of me and I will never escape this hell. MGUS is most likely caused by infection, but I never here of anyone on this forum with MGUS.
Maybe my Lyme kicked off the MGUS but it is like a runaway train and taking care of the infection may not stop the runaway auto-immune system, hence the MGUS. Lyme patients should be checked for MGUS.
Thanks for listening.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm sorry you are suffering. Though many here treat for years and years, if I don't notice some big difference in a year, I'm not sure I can continue. I know many say what choice do you have?
It seems like some get better here and notice improvements reasonably quickly and some rotate drugs forever and backslide quckly. It's frustrating to hear.
I really hope your round of Bartonella Tx yields results Richedie.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
When do you call it quits? It gets expensive. If I go back to mepron, that is $$$. I don't know how long insurance will cover.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That's a million dollar question. I don't want to bankrupt my family long-term. I am not in a position to make a call like this right now as I have not done enough treatment.
When I say quit, I mean move to other choices like rife, herbs, etc. After a year, I would need to have more evidence than just an Igenix WB. They may be reputable, but if I see no imprvement with standard treatment and my only proof of TBDs is Igenix, then...... Sometimes you need to smell the coffee. lol.
I'd at least go through the major co-infections though before deciding treatment is a failure and ALWAYS keep your mind open for other possibilites. While LLMDs seem to have patients' best interest at heart, I never ever lose sight of the fact that they make money off patients too. Maybe not as much as regular specialists (can't prove), but they aren't going hungry either. Weighing the whole situation is key. THIS IS NOT AN ATTACK AGAINST LLMDs so don't construe it as one everyone. It's reality. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
The MGUS aspect is ALWAYS in the back of my head though.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Leading theory is this is caused by an infection. Go figure.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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Don't know if you have taken any herbs or not as part of your treatment. Many of the herbs also have anti-cancer properties.
There is a pubmed article in regards to cryptolepis and cytotoxicity. Hubby had 6 moles fall off while he was taking cryptolepis. This was after about 6 weeks on the herb. This was totally out of the blue and an unexpected positive result from the herb in my opinion.
His father has had numerous pre-cancerous skin lesions removed. Hubby is 55 and had been thinking about seeing a dermatologist to have his moles checked into. I don't think the moles were precancerous, but obviously the herb did something to correct the abnormal skin tissue.
Pretty sure that artemesia also has anti-cancer properties.
I don't recall what your tickborne test results were, but I wouldn't be so quick to assume that not responding to treatment quickly is a sign that the diagnosis is incorrect.
Maybe it would reassure you if you posted your test results again and asked for comments.
Hang in there.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
MGUS (monoclonal gammopathy of undetermined significance) is a condition that is pre multiple myeloma.
I had been diagnosed with MGUS in 1999 and because myeloma is such a serious cancer, I have been checked ever since that time every 6 months as many other MGUS people have, also. (Because I now have an M-spike), I am being checked every 4 months.
There are numerous blood tests involved, which include CMP, CBC, LDH, b2-Microglobulin, protein electrophoresis with Immunofixation electrophoresis, (serum), Quantitative Immunoglobulins, and sometimes a 24 hr urine for Total Protein, Creatinine Clearance, and (Urine) Protein Electrophoresis with immunofixation Electrophoresis., Freelite Chains serum and urine. Sometimes, a CRP.
At this point, I do have an M-spike and elevated Freelite ratio - both worrisome, however, I do not associate any of this with my having Lyme disease.
I have read bits and pieces regarding a correlation but nothing definitive so far.
For me, my having MGUS is 100% more worrisome than my Lyme disease. I was treated for Lyme disease by Dr. C (MO), who is an angel that I credit for my having lesser symptoms. I only Rife now, along with taking tons of supplements/vitamins/exercise.
MGUS, however, will be an ongoing worrisome process for me and with me constantly hoping it never escalates to something worse.
Richedie, I am hoping your treatment for Lyme disease will work for you and that you will feel much better soon. Also, I am hoping you will continue tests that your oncologist wants you to have to keep on top of your MGUS.
I know what you are going through with MGUS and my heart goes out to you. I wish you good health.
lifeline
Posts: 983 | From FL | Registered: Dec 2002
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Alv
Unregistered
posted
You could as well have nematodes or microfiliary worms..that cause that pain.They come with the tick bite and you need to do a parasite cleansing ...maybe more than just one.
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posted
I'm sorry you're still not improving. That's really not unusual in Lyme disease.
It took one full year before I felt ANY better, then another year before I began turning the corner.
I hope the MGUS does not get any worse and that you keep on top of that as well.
Take care. I do hope you'll stick around long enough to turn the corner.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
That's what I was going to say... one year isn't really that long of a time. Most lyme patients don't feel better in a year (so I thought it was odd your LLMD said that by a year his patients were better)... or it at least takes a year to start noticing a difference. For me, just like Tutu said, I didn't notice a difference until I was about a year in. Now, I'm almost two years in and though I am still feeling slightly better, I still have good and bad days.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Sebeteurelyme, Where can you get cryptolepis?
Don't know what to think. My doc says most of their patients are better in about a year. Some more, but most in a year. I have talked to several of their patients and they too said about a year. Maybe a touch longer.
Alv, what type of parasite cleansing do you do - and how??? The salt and C thing worries me due to elevated blood pressure although mine is low!
I was also told I may never get better unless I take T3 for my thyroid to get that in order and my temperature up to normal so my body can metabolize the meds and nutrients better.
Lifeline, It may just be a coincidence that I also have MGUS. I have the IgG spike and it is very low, barely over normal range. I had several tests run and the Hematologist came back saying it looks like mine is benign meaning it will not get worse or turn cancerous.
This is a new test they can do to look at the protein molecules to determine the likelyhood of cancer in the future.
However, do you have pain from MGUS? Most MGUS patients on MGUS forums say they have pain and tingling. Then again, these are probably the people who are really bad off who use these forums.
There is a group of docs at Temple University who talk about most disease having its root in infection. Both my Hematologists both say the main theory is MGUS is started by an infection. This makes sense, the body just doesn't start going haywire for nothing.
I am sure my Lyme and MGUS are linked. If not that, then what! In fact, I am hoping, when I get better, the MGUS will go as well.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I get that question in my head all the time too, what if it's not lyme? I was sick for 15 years then diagnosed by my primary care physician with Lyme. I had a postive Elisa and positive bands on the IGG and IGM but not CDC postive. But she diagnosed me anyways then wouldn't see me again... Another story.
But now it's been three years on treatment and I'm just getting worse. I've tried abx, supplements, rife, and lots of other stuff out of desperation. Nothing has helped at all. If it did it was only short term.
So I went off everything and since I only have insurance left for two more months, I started really complaining to new drs. I got all kinds of tests done, MRIs, tilt table, holter monitor, EMG tests on my arms and legs...
The only thing that ever showed was bulging discs in my neck on my MRI and Nerve damage in my arms on the EMG.
So i was back to square one, the disks explain my arm symptoms, the weakness and tingling and numbness. But what about the rest of my symptoms? Tiredness, weakness, tremors and internal vibrations? If it isn't lyme, why can't they figure out what it is?
Until they come up with a REAL test for lyme, we will never know for sure. Except for the people with rashes, then it's obvious, but for me that never had a rash, or remember a tick bite, there will always be a doubt. But it is the most fitting answer.
ALL of them got rid slowly to one or the other.But I guess this protozoa ( and BART) is MAJOR on all of these infections.
I have treated BART and chase it but this protozoas are as well very bad once they reach the CNS.All of them contribute on your situation.
Knowing exactly which strain you have is hard to find and some we stil ldo not have a name for it .
If you can find somebody that DOES muscle testing at least you can try in your body which your body need at certain time .
Reducing the one you know or getting ridd of them and than findings some combo based on muscle testing that gives you a relief would give the ND an idea of what type is that you are dealing.Rotation and persistance to fight them is also the KEY .
Sometimes the symtoms overlap as they all play a concert in our body and change turns once they are in.
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glm1111
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Member # 16556
posted
Richidie,
I agree with Alv 100%. Burgdorfer found Filarial worms in the ticks he tested. I have been doing the salt/c for almost 3yrs and am 80-90% better.
The sea salt has been very beneficial in killing these parasites and stabilizing my b/p. It's TABLE SALT that is poison.
I have seen EXACTLY the same thing come out of me that is pictured at www.lymephotos.com
A lot of us are actually salt deficient. I have used antiparasitic herbs in the past also. Like Alv says you have to be PERSISTENT. They are master survivalists.
There is no quick cure with Lyme disease. If more people treated with antiparasitics I think they would make much greater progress,
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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richedie
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Member # 14689
posted
I will try anything! Can you do the salt/C while taking ABX or should I wait? What is the best salt to use and the best Vitamin C?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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LisaS
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