Question I was afraid to ask

[DiamondTNT]

I've had a question that I've been afraid to ask but, I'm ready now.

Fall of 2006 I had a mammogram that broke cysts I'd had in my breasts for at least 20 years.  Not long after that I had lymph nodes enlarged under my arms that the docs checked, double checked, had another mammogram, ultrasounds, x-rays.  The nodes would enlarge, then go back to normal, then enlarge again.  January 2008 an x-ray showed a 'shadow' on my left lung so I was sent to an oncologist and had a full PET Scan that showed… nothing.  Mid June '08 is when the severe RA symptoms started and it was late that month that I was finally diagnosed with RA.

Do any of you more experienced ones think those cysts were holding the mycoplasmas/bugs that caused the RA to overcome my immune system once they were let loose?

[Cheryl F]

Wow, that is a very good question. I look forward to the discussion on this topic. I intend to Google it too to see if breast cysts tend to harbor infections.

[Maz]

[user=756]DiamondTNT[/user] wrote:

Do any of you more experienced ones think those cysts were holding the mycoplasmas/bugs that caused the RA to overcome my immune system once they were let loose?

Diamond, I'm no physician, but I do believe the body tries to encapsulate infections to wall them off. Brown mentions this in the book, describing the skein-like formations around infections near the joints – i.e. RA nodules.

I have also had strange breast cysts which I've had aspirated, drained and analysed for cancer that were benign. The explanation I received was hormonal imbalances. This may be true, too, as endocrines can be knocked out by infections. Although I suspect that any fibrotic tissue is likely to be the body doing its best to capture and isolate infection.

One common Lyme coinfection, bartonella, tends to cause enlarged lymph glands and seems to have a proclivity for breast and underarm lymph glands. A few people here can attest to this.

How are you doing on AP otherwise, Diamond? It's been a while since you were here last and just wondering how you're faring. Did you ever look into the possibility of Lyme while on your travels?

Peace, Maz

[JBJBJB]

[user=27]Maz[/user] wrote:

I have also had strange breast cysts which I've had aspirated, drained and analysed for cancer that were benign. The explanation I received was hormonal imbalances. This may be true, too, as endocrines can be knocked out by infections. Although I suspect that any fibrotic tissue is likely to be the body doing its best to capture and isolate infection.

One common Lyme coinfection, bartonella, tends to cause enlarged lymph glands and seems to have a proclivity for breast and underarm lymph glands. A few people here can attest to this.

Maz,

I sound like any one has something or anything has a name, I've got it. Talking about enlarged lymph glands, I've got tons of them. Like Diamond, it comes and goes. Sometimes they hurt. Back when I was in Houston, I also had several small nodules around my under arm area. The doctor told me they were calcium based nodules. They were gone.

The more I read, the more I believe I have bartonella. With all the problems I've got, they are the cluster of bartonella triggered symptoms I believe. I had five day IV zithromax, that really made me feel better for 10 days. Zithromax, as I read, is used to treat bartonella.

I heard Levaquin works better for bartonella. This Flagyl seems to be good on my lungs. However I am developing a lot of swollen problems with a lot of gas and bloating feeling. My hands are very cold and swelling. My leggs are really heavy with swollen… can't walk too much. I know it seems to be circulation problems. I am taking ginger tea and Ginkgo Biloba.  

I am hanging here….:sick:

JB

 

[JBJBJB]

[user=756]DiamondTNT[/user] wrote:

I've had a question that I've been afraid to ask but, I'm ready now.

Fall of 2006 I had a mammogram that broke cysts I'd had in my breasts for at least 20 years.  Not long after that I had lymph nodes enlarged under my arms that the docs checked, double checked, had another mammogram, ultrasounds, x-rays.  The nodes would enlarge, then go back to normal, then enlarge again.  January 2008 an x-ray showed a 'shadow' on my left lung so I was sent to an oncologist and had a full PET Scan that showed… nothing.  Mid June '08 is when the severe RA symptoms started and it was late that month that I was finally diagnosed with RA.

Do any of you more experienced ones think those cysts were holding the mycoplasmas/bugs that caused the RA to overcome my immune system once they were let loose?

Diamond,

I just posted this link http://www.marvistavet.com/html/body_bartonella.html

Check out the Catscratch disease related to Bartonella henselae

[Maz]

[user=266]JBJBJB[/user] wrote:

The more I read, the more I believe I have bartonella. With all the problems I've got, they are the cluster of bartonella triggered symptoms I believe. I had five day IV zithromax, that really made me feel better for 10 days. Zithromax, as I read, is used to treat bartonella.

I heard Levaquin works better for bartonella. This Flagyl seems to be good on my lungs. However I am developing a lot of swollen problems with a lot of gas and bloating feeling. My hands are very cold and swelling. My leggs are really heavy with swollen… can't walk too much. I know it seems to be circulation problems. I am taking ginger tea and Ginkgo Biloba.  

Hi JB,

Good job hanging in there! 🙂  I actually got treated for bartonella with Rifampin, which was great…only side-effect was tangerine orange-colored body emissions. Levaquin is a heavy-hitter, but I chose Rifampin, as I didn't want to risk tendon rupture on top of all the other pain I was experiencing at the time.

With bartonella causing lymphatic nodules, I wouldn't be half surprised if swelling in the extremeties was caused by backup of lymph. I know what you mean about the leg heaviness…in the first year I couldn't stand for longer than a minute or two, as my legs were like lead weights.

When do you next see Dr. C? Maybe at your next visit, he'll switch you from the babs tx to bartonella tx? Some of these abx can't be taken together and it's a step-by-step process, sometimes needing several rounds to beat one coinfection back and then going after another…and back again.

Keep on keeping on, JB, but if you get too uncomfortable, don't be a stoic…just put in a call Dr C and see if he can suggest something for you. 😉

Peace, Maz

[Kim]

JB,

Are you taking systemic enzymes, like Neprinol?  The combination of Neprinol and sauna helped me tremendously with circulation and inflammation.

Take care…..kim

[DiamondTNT]

I tested negative for Lyme in early December.  I guess maybe I should have some additional tests, especially for bartonella and babesia. 

I've always wondered about having 'lumps' aspirated and whatever disease(s) might be 'encased' in them leak out into the body through that needle hole.  20 years ago when my cysts were first found I was told they were 'fatty tissue cysts' and nothing to worry about; that I should go on estrogen replacement therapy because they showed up right after having a hysterectomy.  Instead of leaking from a needle hole, mine were burst apart.

Late November and December was quite a busy time for me as I was bitten in the hand by my own dog, (can't blame him as I was putting medicine in his eye that had just had surgery and it hurt him), my hand started getting infected, I had just started a week off from all antibiotics to prepare for Lyme test, then had 10 days on Levaquin started right after the blood draw for the Lyme test to get rid of the hand/arm infection from the dog bite.  Lyme was negative and I went back on Mino 50 mg twice a day after finishing the Levaquin until the week before Christmas when I did the Clindy IVs.  Back on the Mino after the IVs.

I felt I was doing pretty good during January, except my right shoulder that has hurt for years was getting worse.  My Dr sent me for an MRI on that and it turned out to be a lot of Bursitis; so I had 5 shots of a steroid blend into the shoulder and upper back for that.  I then felt GREAT for about a month, kayaking and riding the bike, even was able to run a little with the dog.

It was time to started moving with the motorhome in mid February right after the shoulder treatment and we spent some time in Alabama and Louisiana.  The flares started again around the beginning of April and just keep getting worse.  I'm trying various doses of the Mino while trying get the the Clindy IVs again. 

I've learned to do the IVs myself and my Dr thinks that's a good thing, but am having trouble getting the supplies.  It appears that Aetna Insurance thinks that the Clindy IVs are not something they want to cover and especially if I'm going to do them myself.

I'm considering getting the supplies from Mexico if I cannot find a way to get them in the US.  Whatever it takes I will get the supplies since I already know how much better I will feel for a while after them.  Or, maybe I will have to fly back to FL for another shoulder treatment and get the supplies for at least 2 rounds of the clindy IVs while I'm there.

Meanwhile, my lifelong low blood pressure has been slowly rising since the RA struck me and I've now added meds for that.  Anybody else have that happen?

While traveling in an RV, I'm finding more RA and related diseases patients and spreading the word about AP and the Road Back Foundation.  My last visit with my FL Dr had her thinking of me as a 'success' story for her compared to how I was when I first started seeing her.  She had been at some seminar where the AP for RA was brought up and touted as well worth while.

 

[Trudi]

[user=756]DiamondTNT[/user] wrote:

I've always wondered about having 'lumps' aspirated and whatever disease(s) might be 'encased' in them leak out into the body through that needle hole.  20 years ago when my cysts were first found I was told they were 'fatty tissue cysts' and nothing to worry about;

I have “fatty lumps” on my thighs.  When I showed them to my LLMD he said that comes from Vitamin A deficiency and is a symptom of Lyme–
here is some info–http://www.ncbi.nlm.nih.gov/pubmed/8843212.  Sure enough, I tested deficient and have stayed deficient even though I supplement :(.  Reminds me of my 3 years of anemia that didn't get better until recently; one of these days my Vit A levels will again be normal.  My body is healing from the inside out.

Meanwhile, my lifelong low blood pressure has been slowly rising since the RA struck me and I've now added meds for that.  Anybody else have that happen?

Yes, this has happened to me.  My doctor told me that my blood pressure problems are related to my infection.  When I googled that I came up with this Harvard study–
http://harvardscience.harvard.edu/medicine-health/articles/common-virus-could-cause-high-blood-pressure.  My doctor took me off of the BP meds a year ago,  because even on them my BP was all over the place.   It is a bit unnerving, but I keep watch and sure enough it stays in the high but acceptable range until the meds (or being out in the sun or in the sauna) stir up the bugs and increase it.  It's really walking a fine line of which I am very watchful of. 

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

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