posted
Does lyme affect you in cycles? for instance right now after a month of severe photosensitivity..it is slightly better (although I still have it)
but my trouble swallowing and respiratory problems have come back after being gone for a week or so..
does this happen to any lyme sufferers or is it a sign of something else?
Posts: 19 | From El Cerrito, Ca | Registered: Sep 2006
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bettyg
Unregistered
posted
Spirochete's life cycle is every 28 days.
Yes, it effects each of us differently. I've had photo sensitivity for 36+ years; perhaps before my never seen tick bite.
Doxy made me 200% worse than how extreme I was to begin with. Doxy causes us bad sunburns too.
Also some of this are HERXs! Hard to tell which are herxs vs. just pure pain from fibromyalgia, etc. Bettyg
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Yes.
But it's hard for me to know whether it's lyme, or babesia WA-1.
I'm tending to think the latter.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Yes! As I have been getting better on treatment for Babs and Lyme the cycles of symptoms have been less intense. My LLMD said that the Lyme is active as long as there are the cycles.
I have pretty distinct cycles and know the week when I will feel the worst. I still have odd things pop up now and then but that one week is when more symptoms return.
Lucy
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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lymie tony z
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Yes most definitely... That's why I referred to it in another post...
If you are in tune with your body you should notice an increase in symptoms every month...
I call these my minor flares...I'll experience a great one or two days feeling almost normal...
and then wham...a major slide downward...this occurs every month around the 21st...
You may also notice an increase of severity even more so... every six months... as I have...
I call them my major flares....mine happen to occur every June and December...
I believe this is when the disease is most active AND most susceptable to being destroyed.
or at least the chete level can be seriously reduced...
These are different from herxes in that I will get them whether I'm on abx or not...
AT times the severity will lessen or increase while on abx...depending on if I switched abx from one regeneration period to the next...
The greater severity experienced while on abx would then be a herx....because I would be killing off some of the chetes....
I supposedly have no other co-infections...however I do suspect Babs....symptoms are consistant...so you be the judge in your own instance....
Hope this helps a little.....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
It happens in cycles for me too. It gets worse every month, but what Zman just said has taken my breath away.
June and December are the exact months that I have had major flares. Ive never understood this before now. I kept pointing this out to my ordinary doctor who thinks Im nuts Im sure.
Cant tell you what a relief it is to read this. Thank you.
April.
Posts: 15 | From Europe | Registered: Sep 2006
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david1097
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posted
It appears that the cyclical pattern observed wth Lyme is in fact a hallmark sign of lyme. If you did not have them then there would be some question as to the syptoms being entirely atributable to Lyme, more specifically, with out the cyclical symtoms, there may some additional underlying infection (co-infection) that is worsened with lyme being present.
From memory, all Borreila infection produce some type of remitting-relapsong disease. The exact mechnism is not entirely inderstood, but the symptom exacerbation is thought to be the result of an inflamatory response that occurs when the pieces of the bacteria are shed after being killed this resulting from the organism changing its outer skin (surface protiens) and being again detected/attacked by the immunue system.
It also appears that antibiotics intensifies the cyclical symtoms levels and produces the cyclical "herxhiemer" reaction that is discussed in the ILADs documents.
In general, the bacteria are suseptable to being killed by antibiotics only when they replicate and while not yet proven there is a lot of speculation that the cycles you see co-relate closely with the replication time of the organism. Interestingly, the anitbodies to the orgnism are dependant on the bacteria skin.
From what I recall not all Borreila species have the same "replication time". The ones that cause "lyme" disease have been shown in culture to replicate every 4 weeks and every 2 weeks.
There is a differnt Borreila that causes remitting-relapsing fever. It has a cycle time of a few days. It is different from lyme in that it is said to produce ever decreasing cyclical symtoms until the infection becomes asymtomatic. However, there have been reports that despite this asymtomatic label, longer term problems sometimes do emerge.
The above is from memory so it is subject to validation, If you are interested just do a google search for Borreila relapsing and a bunch of stuff will come up.
hope this is of some use in understanding the process
Posts: 1184 | From north america | Registered: Feb 2003
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david1097
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posted
There is a lot of confusion about cyst forms... and a lot of unknowns. The bacteria are thought to stay encycsted until the enviroment is suitable for growth. In a test tube they can switch from normal form to encysted form in a few minutes just by placing them in PURE water.
The situation in the body is much more complex as the enviroment that these things see will vary from place to place and will have protagonist and antagonist properties. Which one triggers the cyst formation is unknown, but some have speculated that increased levels of cortisol causes the organism to come out of the cyst form.
Longer term cysts may not be as bad as everyone thinks as it has also been observed, (again from memory) that the longer the organism is in an encysted form, the weaker it gets in terms of virulence, at least in culture.
It may be a bit pre-mature to worry about cysts/motile form populations if you are undergoing IV right now. You should remember that a lot of people are effectively cured with IV ceftriaxone. This does not mean that the organisms are totally wiped out but it does mean that the people can go one with their normal routine without impairment caused by the infection. On the other hand a lot of people remain sick after this treatment or relapse several months later. From what I can make out from ILADs reports and first hand discussions with ILADs Dr's when this worse case situation occurs it is universally felt that there is an underlying co-infection of some sort and that any residual lyme infection has a catalytic effect that magnifies the co-infection.
In reading lyment posts, remember that most of the people here have been sick long term and fall into difficult to treat category (my self included). What is not obvious is that there are many many people that have been succesffuly treated who never come to this web site or those that did , seldom return after being "cured". Of the people that I have met over the years 8 out of 10 were "cured" on the first run of treatment (which lasted varying amounts of time). One very prominent Lyme Dr told me that in 98% of the cases that he see's a full recovery (less any permanent organic damage) within 3 years, even for late stage cases. This fellow has seen many 1000's of cases. It is just that some of us fall into the 2% (as I have) but given the large number of infections nationally, this can add up to a large number of people.
In summary, the odds are in your favour that treatment will work out OK.
Some may not agree with my comments but I am trying to relay what I have seen, read and learned over the years dealing with this thing. I don't keep notes so I am going purely by memory.
On the imaging of the organism. This so far has been done via culture in various media. T suppose that it would be possible to pull out tissue samples and keep them irrigated with curculating blood but the fact that the things can change form in a few minutes makes the processing for microscopic examination rather tricky. I suppose with enough money and effort it could be done. Even dieses that have been studied forever like syphilis cannot be grown in media nor is the life cycle understood, with lyme being such a new comer it is not to hard to see why so littel is known about it. Add to this that it is a much more complex organism than syphillis and can live in a large number of different hosts, each time taking a slightly different form, the problem of understanding what is does and how it works becomes much more difficult.
good luck.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
is everyone that's getting IV rocephin (or its generic form) on pulse therapy with it? i get 1g, 3 times a week. is it proven more effective if administered 4 or 5 or even 7 times a week?
i guess in theory the Bb would come out of cyst form during those 4 days i'm off the IV, then making it possible to kill them off during the 3 days on. anyone know if i'm understanding this properly?
i'm also starting to wonder if i need flagyl too...
Posts: 5 | From michigan | Registered: Sep 2006
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
A couple of notes.
First on symptoms. If they get progressively worse even with trestment I believe that the concensus with both Lyme and non lyme expert Drs is that something else is at play. You may get a positive test result for Lyme but that does not mean that this is entirely what is causing the problems. There are a lot of possible co-infections, some known and many thought to be unknwown. These can also be viruses, in which case you are worse off becuase there are very few anti viral drugs avaialble even to try as a test of response.
There are a lot of "cyclical" diseases. MS as you mention is one, however its cycles are usually measured in months. Brucella, bartonella, malaria(s), herpes and many more display some type of shorter term cycle. Not many are 4 weeks and not many are exactly the same duration between peaks (perhaps for pre-menopausal women). The key here is the repeatability of the cycles. It should be noted that bacterial infections (and maybe some viruses that infect certain cells) are all in competiion with each other for the nutrients reaquired to make them grow. If a more dominant one and a less dominant one infect the same person, treating one and not the other can result in the untreated one emerging after the treated one has been eradicated or gone "dormant" until the next cycle. This is a big part of the problem with tick bourne diseases. The damn tick has every disease that the animals that it fed on had, and this goes back through generations of ticks. While there are a limied number of diseas that ticks (and mosquitoes, lice and any other blood feeding insects) can transmit from one generation to the next there are plenty enough to cause all sorts of problem with people. Viruese are less of a problem because not all viruses are viable in human but bacteria is a different story as there are a lot of things that will infect people.
On the pulsing. If you read the ILADs guideline carefully you will see that is says pulsing has been shown to be easier on the patient and cost less then continuos treatment. I have not seen (and that does not mean it is not out there) where it was reported that the treatment outcome is better.
From a paper on the subject, in culture (in-vitro), the cyst needs almost 2 weeks to emerge from cysts after they have been forced into that state. Obviously things are different in the body but since pretty well all other cyst information that people here talk about is based on in-vitro I though that I would mention this finding.
There is also the information on Flagyl. The information is inconsistent in that some claim that it can attack the bacteria in cycst form, whereas all I could ever find are some papers indicating that in-vitro tests show that the flaygl inhibits the formation of cyste, presumably by inhabition of the cyst wall synthesis. In either case it helps a lot of people but I wonder if this cyst stuff is the reason why.
It is interesting that flaygl is used as a anti protozoal drug and I have many times wondered if there are any protozoal infections beyond the known ones that are transmitted by the tick. Animals have many possible protozoal infections, so it would not be a long stretch to assume that the bugs can also carry some of these.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
My LLMD mentioned that he has seen data that indicates that pulsing another abx during that motnhly cycle (when they are replicating) on top of my typically abx could speed recovery. I haven't tried it yet. It would be great if we could figure out exactly when they were replicating because some abx work during that phase only and we could just target them during that phase.
It would also be great if.... my insurance co would pay for him and meds and... would have caught this damn disease 5 years ago before I got so sick.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
yes
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I don't know...
maybe it's just me...but
some folks take simple things and explain them till there as clear as mud....
Some llmd's pulse...some do not...
they are as in the dark as we all are as to what works best...
I believe the pulsing is borrowed from the aids treatments being pulsed...to give resistant viruses time to replicate non resistant offspring.
please pm me about this doctor that has had a 98percent recovery score...
even with late stage lymies you say!
I want to meet up with this doc......zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Yes, I have monthly cycles where I get worse for approximately one week at the same time each month. Symptoms intensify or reappear, herxing increases and I start to think I'm getting worse.
Next I have 3 weeks where I am slightly better than the previous month. Symptoms decrease or go away, new but milder symptoms may appear. Then the cycle repeats.
Symptoms also come & go in odd cycles. In the beginning the cycles were much longer. A symptom like rib pain would start every afternoon and continue until 11pm. This went on for over a year. Then it started to skip some days. Eventually the pain only came once or twice a week durung my good weeks. Much worse during my "bad" week.
Now after 26th months of treatment I have mini cycles, like my knees or knuckles hurting for the hour after I take antibiotics. This will happen several days in a row and then stop. Then it may start up again a few weeks or months later.
Keeping a log helps me track the cycles and not get depressed during the bad week. My first thought is always that I'm getting worse but then I read my log and see that the same thing happened the month before. As I read back over many months, I realize how much better I'm doing. hats
Posts: 956 | From MA | Registered: Nov 2004
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi ALL
Yep my symptoms flair in about 28 day cycles
Threw my treatment the cycle symptoms are getting less severe ans shorter each time--
Im going threw one right now -Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I have two monthly flares. One in the beginning around the 11th which is fairly short and another around the 21st.
around the 16th and 17th of each month i have a few days where i feel normal...
on these days even my bladder doesnt hurt as much....it is very odd to me.
its happening tonite.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Yes, I flare every three to four weeks with severe fatigue, headaches, joint aches, brain fog, chills, fever, constant pain in some new place, etc, IF I have been taking my meds.
When off meds, I still have Lyme flares around every three to four weeks. Just not as severe. Except the headaches a bit worse.
Just my opinion, but I got the best co infection test reading when I went in to have them draw my blood during my herx-feeling week. I had also been off abx for a couple months at that time.
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